Livin' The Vida Lockdown: Day Thirty-One - Getting Through Tough Days

Livin’ The Vida Lockdown: Day Thirty-One – Getting Through Tough Days

I’m going to be honest with you all, I was dreading today. I’d been dreading it for a few weeks and until recently my plan was to spend the day hiding in my bed – I was in a much worse place mentally than I am right now.

Today marks 5 years since my life completely changed after a horse riding accident. If you’ve read my blogs for a while you’ll probably know quite a lot if not I started horse riding at university and loved it, 6 months into learning to ride I fell and broke part of my spine. It was a long recovery and I later developed Fibromyalgia.

Normally, I’d make sure I treated myself on the day. If I could help it I wouldn’t plan anything but I’d maybe go to my local shopping center and let myself buy a few things, go to a coffee shop and maybe see a friend or my family and get through the day. Obviously I couldn’t do that today.

I woke up and checked my social media and BAM Facebook memories, thank you very much for the picture of me riding. Thank you indeed. So I got up, got my cup of tea and let myself have some time to sit and think – feel how I needed to feel. I did get teary and emotional thinking about all the changes, everything that happened.

I’m working through the event, what happened after and my Fibromyalgia diagnosis in therapy. I do think that had helped this year. I let myself feel and then got up, got showered and dressed. I worked all morning and went out for a walk to feel the sun on my skin.

While I was walking I thought about how far I’ve come. Some days I can’t do that, other days (in non lockdown times) I can go to the gym. Each day is different but I think I’m doing well. Would I have got through today a few years ago? I don’t know.

It’s a bit of a rambly post, but I expected that. I’m proud of myself for where I am. Does that mean I don’t struggle? No. I struggle mentally and physically with the fact my life has changed forever and I’ve had to change the future I thought I would have.

That said I’m trying. I’m taking it day by day and I’m proud of myself for getting through today in a totally weird and stressful situation.

Peace out.

Livin' The Vida Lockdown: Day Sixteen - Life With A Chronic Illness Right Now

Livin’ The Vida Lockdown: Day Sixteen – Life With A Chronic Illness Right Now

I woke up this morning properly and about 90% of my body hurt. I knew what was happening before I even opened my eyes. I’d spent most of the night tossing and turning, fully aware of what a pain in the arse I was being but I couldn’t get comfortable. Fibro has been rumbling along during all of this but today, again, it decided to kick my arse.

I’ve been debating about whether to write about Chronic Illness right now when so much has been going on health wise. Does it matter? Fibro doesn’t put me at a higher risk (asthma is another story) but as with any illness, Fibro would put up a fight at the same time taking me longer to get better. So I’ve been relying on family, friends and food deliveries.

That said, pandemic or no pandemic I’m still living with it every day. I know things could be worse, but that doesn’t take the pain away. Right now I’m not taking my painkillers of preference as they are part of the ibuprofen group which people have been advised to avoid. So I’m plodding along with paracetamol – which doesn’t do much at all.

I’ve felt for a while I couldn’t talk about Fibro or how it is right now, despite the fact that stress is a huge trigger for a lot of people with the illness. I thought, well when people are dying I can’t seem like I’m complaining but that was incredibly isolating. Slowly, I’ve seen other spoonies say that they feel the same way.

So I guess I wanted to write for my fellow spoonies or anyone living with a long term illness to say that it’s ok to still feel frustrated, sad or fed up with your illness right now. It’s ok to struggle with your health in another way because our illnesses don’t care if there’s a worldwide crisis, our bodies are doing what they’re going to do.

Am I Disabled?

Am I Disabled?

Being able-bodied and minded is something I think most of us take for granted until it impacts us in some way. I’ll admit it wasn’t something I thought much about myself until my accident. There’s a grey area though when your life changes in a physical or mental way that – at what point are you disabled? Who decides?

I (wrongly) thought that you had to be recieving some kind of disability assistance to be classed as disabled, however Citizens Advice states that:

“The definition is set out in section 6 of the Equality Act 2010. It says you’re disabled if:

  • you have a physical or mental impairment
  • that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities

I have a long term condition that impacts most of my life. At my worst I struggle to move, to walk, have bad fatigue and am in so much pain I can’t concentrate on anything else. I’m not looking for sympathy that’s just the way it is sometimes. It meant I had to change a lot of things and reconsider how I was going to live the life I wanted to live with certain limitations.

Disabled is such a loaded word. We’ve been shown certain images of what disabled looks like – even if, slowly, we are becoming more educated about invisible illnesses but we’re not quite there yet. People still eye me when I sit in a seat for those who need it if I don’t have my walking stick. There have been times that I’ve taken my stick when I’m feeling ok just so I don’t get dirty look.

To me, I am disabled and I refuse to be ashamed of that. I still feel strange saying that out loud – I worry about not seeming ‘sick’ enough. I worry that I won’t be taken seriously but I’m working on it. Talking about invisible illness is a great start to making sure more people are heard and understood.

Changing the narrative is something we can all do together. Instead of seeing disabled people as those who are to be pitied or always seen as ‘brave’ for simply doing things anyone else would do. Does it often take more effort? Yes. Is it annoying? Definitely.

I’d love to hear your stories below!

10 Thoughts Spoonies Have Over The Holidays

Blogmas 2019: 10 Thoughts Spoonies Have Over The Holidays

Ah Spoonie life, aren’t you lovely? Christmas is one of my favourite times of the year buuuut my Fibro doesn’t always play nicely. If you’re a regular reader though you know I’ll poke fun at myself when I can because you have to laugh at the ridiculousness of it all.

So, I thought I’d have a little bit of fun with this one because I know a lot of my Spoonie friends are feeling the same

1. I’m going to pace myself this year

Personally, I alway start with the greatest of intentions, I’m going to chill out, have rest breaks etc. That said though, I’m not the best at pacing myself at a normal time of the year – let alone the time I’m allowed to be super extra.

2. If one more person asks me if I’m ‘better yet’ I may start throwing the Sprouts

WHAT PART OF CHRONIC ILLNESS DON’T YOU UNDERSTAND.

3. I wonder if I could make an advent calendar for my meds to make them more festive…

Always looking for ways to be more festive!

4. Can I put a new body on my Christmas list?

Don’t say you haven’t thought about it…I know I have. New central nervous system? Come to mumma!

5. How do I know/ am I related to so many people?

Seriously though, everyone wants to meet up at Christmas for a catch up or a coffee…because it’s Christmas/the holidays.

Of course you’re (mostly) grateful that there are people that love and care for you but trying to fit them all into the 24 days before Christmas on limited spoons is tough.

6. Yes I have a mobility aid. Yes I’m XX years old. Yes you are in my way.

I don’t know about you but when I’m out in the hustle and bustle of Christmas shopping and I take my walking stick it feels like everyone is either giving a quizzical glance or simply ignores it and me, particularly on the tube, where I need to sit down.

7. How many times can I say no to invitation before I seem like a Grinch?

This happens a lot when your non-spoonie friends want to hang out/ go drinking/ go for dinner etc. I’m usually weighing up my energy levels so I can work, socialise, clean my flat etc. I end up feeling like a TOTAL Grinch minus the cool outfit…

8. Naps, all of the naps, PLEASE

Need I say more?

9. My New Years Eve includes pjs, blankets and falling asleep way before midnight

I haven’t been ‘out out’ on New Years…ever. At most I’ve gone to a house party where there’s no pressure, no queueing for drinks and you can move around. That said, my perfect New Years is definitely on my sofa in cosy PJs with a pile of chocolate and my laptop.

10. It’ll be more relaxing next year…maybe

But I’m yet to have a relaxing next year!

Are there any other things my fellow Spoonies would add? Let me know below.

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!

A Typical Day For Me With Fibromyalgia

Of course, with the magic that is Fibromyalgia a bad pain day means these can be completely wiped out, I might get up earlier or later – squeeze in a nap if my sleep has been poor

8am – I’ll set an alarm for a hopeful 8am start and depending on how I’ve slept the night before I get up. Although, if you ask my fiancé I lay in bed after my alarm and it’s super annoying…oops.

8 – 9am – Waking up is normally when I’m at my most stiff so it can be quite painful. My priority is getting up, getting the hamsters fed and having some caffeine while catching up on some YouTube videos. If I’m feeling okay I’ll also get in a morning shower.

9 – 10am – Most of my freelance clients work 9-5 and while I do have more flexibility I try and log in between 9 and 10 so they’re not waiting too long for a response. Equally, the quality of sleep I’ve had can hugely impact how quickly I can work and how foggy my brain is.

Writing my to do list for the day is really helpful to get an idea of where I’m at and what my priorities are. I also will check all my social media, including LinkedIn for work.

10am – 1pm – This is where I’ll get my main bulk of the mornings work done, also *at least* one more caffeine break. I’m all about the tea guys!

I’ll also need to try to get up and move around because my joints will get super sore despite trying to work in comfy clothes with pillows. That said, I’m normally much more alert and able in the mornings so I’ll get the most challenging work out of the way then.

1 – 2pm – Time to take a break. When I’m working at home I can eat and work so it’s not normally an eating break instead I might take a shower, pop out to get something or go over and see my Mum to get some company.

2 – 5pm – Time to reevaluate the to do list and check in with how my body is feeling. If I’m feeling good I might add a few more things to my to do list or know I’m on track. On the other hand if I’m struggling I have to prioritise what needs to be done. This is something I’m still working on because in my mind everything needs to be done, most of the time they are self imposed deadlines.

I also might move over to working on the sofa if I’m in a lot of pain. I know a lot of people advise against this for freelancers but at times it is literally the only way I can concentrate. Pain takes up a lot of brain space!

5 – 6pm – I’ll finish working normally between 5 & 6 this is where it can get risky, I’ll normally lay on the sofa and try to chill out – occasionally I will fall asleep again, a ‘danger sleep’ because it can throw my sleep pattern even more out of the window.

6 – 9pm – General evening chill unless I’m meeting a friend, which I try and do at least once a fortnight. Occasionally I will be catchin g up on some work. I love my job and I’m not that good at completely switching off.

I’ll have some dinner with Ali, play with the hamsters and normally work on the blog while watching some YouTube or Netflix. Wild times.

9 – 11pm – Random burst of energy you say? Yep if I’ve been at home all evening it will hit me here. If I’m not too sore I’ll try and do some light exercises around this time to make the most of the burst and *hopefully* help me to sleep.

11pm – 1am – At some point I’ll take myself off the bed hoping I’ll get a decent nights sleep. While some days I will be snoring within a few minutes, others I can be awake until 1am or later not able to sleep.

Do you have Fibro? I’d love to hear what your days look like below!

Fibromyalgia Awareness Day 2019

Today is Fibromyalgia Awareness Day! If you’ve been following my blog for a while you’ll know that I have and live with Fibro. I was in a horse riding accident which caused me to fracture one of my vertebrae and damage 3 others. The trauma of that accident lead me to developing the illness, which is chronic – I will now live with it for the rest of my life.

So, what are some of the symptoms of Fibromyalgia, the NHS describes them as:

“As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • extreme tiredness (fatigue)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating”

I tick off each and every one of those. It’s a super fun party lifestyle!

I thought I would write a post about how to live with the illness, about how I am thankful I am and the positives I have found. I will do a post like that, in fact, I’m pretty sure I have written posts like that. When I write those posts I’m in a good place and they are truthful, but there are times when, like today, I’m not grateful I’m just tired.

My life completely and utterly changed because of this illness, a ‘normal’ 9-5 meant I couldn’t do anything else other than work. I needed a job to pay the bills, which eventually lead me to freelancing (see, there’s one of those silver linings).

I had to plan rest days, think about how my plans would impact me for days or even weeks after, get a walking stick. The hardest part though? For me it has been the mental struggle adjusting myself to not being able to do absolutely everything for myself. I’ve an incredibly independent person and knowing that, sometimes, I need a little help has been tough.

I don’t think that when I was diagnosed I really processed or dealt with the illness I’d been diagnosed with. It’s something that I’m trying to work though now – I’m getting help with how I feel and the anxiety I have about the future.

While this might not be a super fun or happy read, it is truthful about how I feel at this current moment.

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?

Top Posts of 2018

My Most Popular Posts Of 2018!

I don’t know about you but I find my analytics absolutely fascinating. Stats might not be everything but year after year I love to see what my readers have been getting up to on my site. So, I thought, why not make a post out of it? 

I’ll always write what I want to write but, at the same time, my blog – and the opportunities I get from it is down to my wonderful readers. On that note I’m going to stop babbling and let you actually read! 

Number 10: Fibromyalgia And Me 

I’m really pleased this post made my top 10, because it was one I was very nervous about posting. I only got diagnosed with Fibromyalgia earlier this year and my reaction was…complicated.

I didn’t want people to see me differently BUT needed to reevaluate parts of my life. Now I feel much better and can be much more open about living with Fibro. The post that started it all is here.

Number 9: I’m Starting Again 

In July I found myself job hunting again and it knocked my confidence. This post was just chatting about how I felt, what I was trying to do and a general update. You can read about it here

Number 8: I’m In A Funk 

Another one of my mental health posts to hit the top 10. I wanted to get out there that I was struggling and comparing myself a lot to others. It was a to the point post about how we look at ourselves and comparison. 

Number 7: Carrying On: Surviving The Past Year 

A post from April about the previous 365 days that had been pretty tough (little did I know this year would have a LOT of ups and downs too!). I like to keep you guys in the loop and this was looking back on how far I’d come.

Number 6: I’m Obese? 

I really wanted to write about body image and expectations because of a few knocks I’d had. Following on from a doctors appointment where I was deemed overweight-obese by my BMI, despite being a size 12-14 I decided to get my feelings down once and for all! 

Number 5: Why I Will NEVER Use An App For Birth Control 

Responding to a worrying idea that people were using a fairly risky app as a way to try and prevent pregnancy got in the top 5. I made my feelings very clear and, actually, had a lot of great conversations about it! 

Number 4: The Pros and Cons Of Long Distance 

I’m in a long distance relationship for chunks of the year. I get asked quite a lot of questions, some weird sympathy and so I wrote about what’s it’s like – and you can check it out here.

Number 3: Taking The Plunge – I’m A Freelancer 

Not something I entirely planned for this year but it happened! I’m planning to do an update on being freelance in the new year too! The blog about how it all started is here

Number 2: Harry Potter Haul: Updated 

One of my most popular blogs EVER was a Harry Potter haul I wrote while at university. So, when I went to London for a Potter filled day shortly after Christmas I came back with a little collection and wanted to share! The updated version is here.

Number 1: Stressed, Depressed, But Well Dressed? 

This is one that really, really surprised me. I wrote the post a few years ago about a top I saw with the slogan on and how I felt about the phrase. Next year I really want to talk more about Mental Health! You can read it here.

So, that’s my top posts of 2018! Thank you to each and every one of you who head read, liked and commented on my posts – it means so much. 

Which of these was your favourite? I’d love to know in the comments below! 

*please note these were the most popular at the time of writing.

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!