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!

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.

Cold Weather essentials for spoonies

Cold Weather Essentials For Spoonies!

Brr, it’s chilly!

Very few people love the freezing cold, but when you’re a Spoonie (a name for someone who has a chronic illness) it can be a bit of a nightmare. For me, personally, the bold really makes my joints ache so it’s easy to feel a bit miserable and grumpy. So, it got me thinking, what are my essentials for the cold weather as a Spoonie?

A Good Coat 

Ok, I’m going to sound like your Mum. I was young and cool once and wanted to just wear a hoodie and no coat. Those days are OVER. Spending money on a warm coat is a good idea because staying warm is key (you’ll see a theme through this post). I’ve had coats from Superdry for the past few years and can highly recommend them.

Hat and Scarf 

I have a really cosy Gryffindor scarf that I absolutely love and top it off with a matching red hat (go, go Gryffindor). These can make all the difference for keeping yourself warm and you can get some really cute ones too! Also when I was leaving the house and it was -5 outside they were essential.

Gloves 

I lose gloves all the time. Every single year. Which is why I try not to buy ones that are really expensive. As nice as keeping your fingers toasty is, for me it’s much more important that the thicker material on my wrists keeps them nice and toasty as my wrists can get very sore when it gets to the minus numbers.

2018

Hot Water Bottle

I’ve been known to take a hot water bottle to work. I have absolutely no shame in that. They are an amazing invention. Cold at night? Hot Water Bottle. Achy joints? Hot Water Bottle. Period Cramps? Hot Water Bottle. They rule all! You can also get them really cheap on Amazon or in Primark etc. Mine was under £5 a few years ago.

Blankets 

I have a thing about blankets. Pro tip, Primark have amazingly snuggly blankets. I’ve got probably 7 or 8 blankets, most of them are Disney. I love them and you can find me every night snuggled up with a blanket.

Fluffy Socks 

Do I really need to explain these? Good for keeping your feet warm, they’re fun and you can slide across the floor.

Warm Drinks 

All the tea for me!

 

What do you think is essential for getting through the winter months? Let me know in the comments below!