I Don’t Always Love My Body

One of my favourite YouTubers Jessica Kellgren-Fozard posted a video earlier this month about the fact that it’s okay if we don’t always love our bodies. It really got me thinking about my own feelings toward my body and how I fit into the body positivity movement. I have a really complicated relationship with my body I can both love and loathe it sometimes within a day I can intensely feel both.

Before my accident I didn’t always like my appearance but it was pretty standard stuff, I’d like a flatter stomach, longer legs etc. I had my accident, then I got sick. All of a sudden I was putting on a lot of weight, I was in pain all the time, I was getting dark circles under my eyes and I felt awful. I didn’t recognise this body and I didn’t want it.

There have been hours where I’ve fought with my body, where I haven’t been kind or treated it well. Where I’ve restricted food that I wanted or pushed myself too hard to try and look how I used to before. Bare in mind that when I had the accident I was 20, I’m now 25 and I don’t know many women who can still fit into the same jeans from 5 years ago…

There are still times, days or sometimes weeks where I’m not happy. Where I can’t shout SELF LOVE and shake it all about. I do want to hide, I feel sad and I wear my baggiest clothes. I also get mad and upset and frustrated. And that’s ok.

When I am FEELING myself I will take pictures and post them online. I’m not wasting my days where I am in love with the way I look, people don’t want to see them? They don’t have to follow me. You can probably see where my physical and mental health are good because there will be a spatterings of selfies and outfit pics.

The thing is I know in the next 5-10 years my body will continue to change. I’m currently working towards getting fit and healthy so I feel better when I know all eyes are on me at my wedding AND so I can keep up with Ali on our honeymoon. After that I do hope to be a mother and my body will change again and then it will keep changing throughout my life.

When your body can go against you and there’s nothing you can do I think it’s pretty normal to have periods where you aren’t loving it. Where you don’t want to post pictures or smile because it’s maddening. I’m also still getting used to knowing that I will have issues for the rest of my life.

So, no I don’t always love my body but sometimes I feel great and want to share – I think that’s pretty normal. I still think we need the body positivity movement. We need to see stretch marks, different shapes, disables bodies and wobbles because airbrushing and ‘perfection’ is so done.

What’s your view on body positivity?

10 Things Not To Say To Chronically Ill People - And What To Say Instead

10 Things Not To Say To Chronically Ill People – And What To Say Instead

Having a chronic illness can be a bit of a minefield in itself. I’ve been thinking a lot about things that people say that isn’t helpful and what could be said instead.

A lot of the time people don’t intend to hurt someone’s feelings when they say these things but when you’re already fighting with your body 24/7 the words of someone else can make it that bit more difficult.

So, I thought I’d write a handy guide from my perspective about things not to say to a chronically ill person and what you might be able to say instead.

But you look healthy!”

First of all, thank you. Second of all, ‘looking’ healthy can take a lot of effort. I have showered, sorted my hair and maybe even put on some make up most of which makes me tired. There are many invisible illnesses, just because you can’t see it doesn’t mean it’s not there.

Instead, you can comment on how great someone looks without mentioning the illness – everyone loves a boost!

You should exercise more, that’ll help

Believe me I would love to be able to exercise every week without fail. Before my accident I was horse riding at least once a week and probably in the best shape I’ve been in as an adult.

The fact of the matter is I can’t do that anymore. I have to weigh up what I’m doing that week (Do I have any big deadlines? Do I need to go somewhere for work or with friends?) with the kind of exercise.

Currently I’m trying to do something every week but when every part of me hurts like I have the flu simply walking around my flat can be pretty painful. That said, I do try and get light exercise in no matter what.

Instead, why not ask them what activities they enjoy, if they’ve found anything that helps them and offer to go with. Some of my friends are excellent at this – we might go for a light work out together and I’ll just take a book so they can carry on if it gets too much!

Have you tried going to bed earlier?

Really Susan? I hadn’t thought about going to bed earlier to be less tired! Can you detect the sarcasm? Fatigue is a bit part of some chronic illnesses. When I’m in a flare I could sleep for 12 hours and still wake up feeling exhausted. Even when I’m not in flare if I have a busy weekend socialising I probably won’t be back to my version of normal for about a week.

Instead, maybe just don’t question their habits. It’s a bit of a dick move.

How come you can go to work/go out but you can’t come to my thing?”

I work because I need money to live. If I’m low on energy that’s my priority. Next question Janet.

Instead, be understanding let them know that it can’t be east to try and manage expectations and maybe recommend doing something together that’s less energy consuming.

You’re so boring”

Here’s the thing, when you’re chronically ill you might not have the most exciting life. I know that normally I’m in my pjs by 7pm if I can be just to be comfortable.

I know that for me, personally, being called boring drives me mad and sometimes hurts my feelings. I miss being able to do fun things and not think about how long it will take for me to feel better after doing any kind of activity.

Instead, have a bit of empathy, c’mon.

You’re too young to be ill/ have that illness.

HAHAHAHAHA. I wish! I get this a lot and I know some of my fellow spoonies do too. I’ve had old people look at me in disgust with my walking stick and people eye me suspiciously and refuse to give me a seat on the tube.

Being chronically ill can impact anyone no matter what their age and because, without make-up I’m told I look 17 it does not help my case. Either way, age has nothing to do with it.

Instead, ask polite questions if they’re ok with that and ask them how it feels to be chronically ill/disabled by an illness at a young age. Also if you hear someone else making this comment, sassy replies are appreciated.

Have you tried…”

People love to recommend things to those who are chronically ill and most of the time they want to help but sometimes those recommendations can be a little ridiculous. What worked for your brothers, nephews, girlfriends turtle probably won’t work for me.

Instead, if you have heard about something they might not have – think about how you phrase it. It’s all about the phrasing, try saying something like – “I heard about this thing, it made me think of you I don’t know if it would be of any benefit?” That way you’re letting them know that you respect that they know their own body.

Think positive!

I try my damned hardest to be positive where I can but living a life full of pain definitely wears you down. Telling someone to think positive can not only be irritating bust also hurtful. Think about why they might be so down and how you can help before saying it. Also word to the wise, comparing it to another illness is also not a reason to be positive.

Instead, let people have their moment – life with a Chronic Illness can suck! But also remind them of the things they’re good at, you can feel totally useless when you’re in flare.

I know how you feel “

Unless you have a chronic illness, I’m sorry but you don’t. As much as people are trying to be empathetic here it can be so frustrating. You might be tired/ aching/ feel run down after the weekend but I promise you it’s not the same.

Instead, ask them if there is anything you can do to help or if they want to talk through stuff. Or just acknowledge that you don’t know how they feel exactly but you can empathise.

Don’t take XX/ Does medication really work?”

Ah, commenting on someone else’s medication or treatment plan. This is a big one that, again, is often well meaning. A lot of the time people have heard horror stories of a certain drug and some don’t believe in taking medication at all.

From personal experience finding a medication that even remotely helps your symptoms can take a long time and causes a lot of side effects. For me alone I’ve had to try medication that has made me vomit, have headaches, increased my anxiety to the point of having panic attacks, have heart palpitations, night sweats and lots of other wonderful things.

Instead, if you really want to talk medication ask them about their experiences but honestly? I’d just leave it alone – it’s a deeply personal thing!

Is there anything you’d add or do you have any questions? Leave them in the comments below!

Using A Walking Stick In Your Twenties

What It’s Like Using A Walking Stick In Your 20s

This year I want to talk more about living with a chronic health condition. I’ve decided I’m done with it being a secret – this is me! Something that I found difficult at first was using a walking stick in public – and I don’t think I’m the only one!

As with many invisible illnesses people can misinterpreted why you need that seat on the bus/tube/train. Even with a ‘please offer me a seat badge’ I always felt that people were questioning me with their stares. I look young and healthy, ‘too young to have those problems’ as people have told me.

When using a walking stick, in theory, this should make people a little more understanding, although in my experience people are still questioning as to why someone young is using a walking stick.

Walking Stick in Disneyland

Way back when I initially broke my back, walking was a struggle and while I was recovering I still found a numbness in my legs that came and went. When I had to go out for the day I used a crutch to try and balance myself, hoping that with time and exercises the feeling would come back properly.

After a period of time I was diagnosed with Fibromyalgia and a big part of living with it is finding ways to make you illness more bearable and control the illness rather than the other way around. One of my friends used a foldable walking stick, so I hesitantly ordered one.

I’ll admit when I first got it I hid it away. I was embarrassed – there weren’t many nice designs and it felt so old. That was until I knew I was headed into London – I’d need the support, so I took it with me folded in my bag ‘just in case’. And, you guessed it I ended up using it.

Wheelchair in Disneyland

I’d love to say after that I didn’t feel self-conscious, I still do sometimes! Going to Disneyland in September was the most I’d used it in one go, as well as a wheelchair. I was suddenly self-conscious, I didn’t want people to think I couldn’t do stuff for myself or feel sorry for me – and I think that was my biggest fear. That this would take my independence.

It did nothing of the sort, in fact it made me feel prepared. Because I have one that folds down it means that I can see how I feel and if I do need to use it, I can. The biggest block for me was mental. It worried what people thought and now I’m happy enough to tell them why I use it and if they don’t like it that’s their problem.

Using a walking stick in my twenties wasn’t exactly how I thought things would go but I really have 2 choices. I struggle to walk and am in a lot of pain on days I would like to enjoy myself, or I use the damn stick. Which would you choose?

5 ways to pace yourself over Christmas

5 Ways To Pace Yourself Over Christmas

CHRISTMAS IS COMING!

I absolutely love Christmas, it’s one of my favourite times of the year BUT it’s also incredibly busy. Because of that, I need to pace myself and I know that’s the case for a lot of other Spoonies too! So here are 5 ways I plan to pace myself.

If you can get things done in advance, go for it! 

I started Christmas shopping as early as I possibly could. Not for the bragging rights (although yes it is a nice feeling) because it took a lot of pressure and stress out of the run-up to Christmas.

It also meant I could spread the cost out which was another thing off of my mind. For me, long periods of intense stress can cause a flare so I’ll try and help myself as much as possible.

Plan in rest time. 

I know that I need to get a good sleep and not be on the go every minute of every day. I need to plan in rest breaks to make sure that I’m healthy and can get the best out of the day.

To do this, I try and have at least one day of the weekend to myself or make it more chilled. I try and make sure that I get to bed at a reasonable time too! Health is important and being sick over Christmas completely sucks.

Know that it’s ok to say no! 

Everyone wants to meet up, go to this, go to that. As much as I’d love to go and do everything the simple fact is that I can’t. Over Christmas, I miss out on pay because I’m Freelance! I need to not only look after my health but also my bank balance!

Let people help you.  

I’m not great at this. I fight to be as independent as possible but with such a busy time of year taking help when possible can really help. Someone else wants to drive? Let them! Someone else wants to do the cooking. Go ahead! If people want to help you they’re doing it out of kindness and, usually, love.

Try and stay in some kind of routine where you can! 

Christmas day is obviously exempt from this if you are like me and wake up stupidly early because you are so excited. I get a week and a bit where I’m not working. As much as I want to nap as much as possible every single afternoon I know it’s going to impact me later so I try and stick to some kind of routine.

I might get up a little later, stay up more or go out with friends – but I still have some idea of getting a good 8-9 hours every night then get dressed and get on with what I want or need to do.

 

Is there anything you’d add to this list? Let me know in the comments below!

Paying for a good time – Spoonie Life

Like most 20 somethings I want to have adventures, memories I can look back on when life slows down a bit and say ‘that was a damn good time’. Unlike most of the people I know, they don’t have to barter with their health. If you’re a fellow Spoonie, you’re probably nodding in agreement.

Back in September, I was lucky enough to go to Disneyland with my Mum and sister. I mean, DISNEYLAND! We were taking a trip to Paris and I was ready for it, matching t-shirts and ears were essentials. From the moment we booked I also had a niggling feeling, a voice in the back fo my mind you’re going to pay for it later. And, boy did I. Even though we rented a wheelchair, got fast passes so, and had rest stops in the hotel (on more than one occasion I had to take emergency naps so that I could watch the fireworks or make it through dinner. I thought I’d handled the trip reasonably well it wasn’t until the last day I realised… I was in minus numbers, the spoons were scattered all over the floor.

 

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The thought that we have to ‘pay’ or reserve our spoons when we know we’re going to have to do something that will make us tired is hard. When I was first diagnosed, I rebelled against it – a lot. I got incredibly depressed and tried to prove to myself I could still do everything – I wasn’t ready to accept I needed to modify things. Now, I am better, I’ll try and plan a rest day here and there or not set my alarm and just let myself sleep. Little things that make life easier.

I joke that a big night out or day of big plans has me making deals with the devil, but really it’s made me appreciate them even more. As soon as I acknowledged that this was my life now, I started appreciating the things I do, because I have to choose them carefully. That doesn’t mean I can’t be spontaneous and have a trip on the beach – but I just have to rest a little more, maybe get a train rather than drive.

I refused to give up every fun part of my life to this illness – and I know I am truly lucky to do so.