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?

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.

Does Positivity Work With Pain Management

Does Positivity Work in Pain Management?

Hello, my lovely readers!

Today I want to talk about managing pain. It will come as no surprise to my regular readers I think about this more than most people after an accident a few years ago. I live with chronic pain and most people don’t know when they meet me it can be pretty surprising because I’m very positive as a person. And that’s central to today’s post, does positivity work?

I’ve met with a lot of doctors and multiple times I’ve been told ‘your positive attitude will pull you through pain’. A few years ago I would have scoffed and I definitely think this doesn’t apply to every situation. When I first broke my back positivity wasn’t happening, I was in agony and when I wasn’t I was asleep. Then it came to recovery and my attitude did play a big part.

In Recovery 

This was probably the hardest time to be positive. There were a lot of things up in the air at this time, I was obviously in a lot of pain and having to navigate what was going on. That said trying to keep some positivity was important, particularly in physiotherapy because that shit can get tough! I kept focused on getting better and other positive things and it definitely helped.

In Diagnosis 

Diagnosis was weird, I was happy to have an answer, horrified about what it meant for me and wanting to look at what I could do next. It was a mix of emotions. No matter what I had this determination not to give up, I had to still live my life. I got told time and time again the determination and all the positivity I could muster would get me where I wanted to be.

In Life

Ah life, it does like to give you a kick when you don’t need it. Life is hard, people try and say it’s not but let’s be real. So, staying positive in life when your body hurts all over? I take it one day at a time. That’s honestly it. The only future things I try to focus on are things I’m looking forward to, I try and write down one thing a month and when I’m in a lot of pain have the mentality that this will pass and once it does I’m a bit closer to the thing I’m looking forward to.

 

So, yes I do think positivity plays a huge part BUT having time to be upset, to struggle and to be furious is a big part of recovery. Do I have days where I’m pissed off or I cry because things changed? Of course, I do. Sometimes I have weeks where I feel this way. THIS IS NORMAL! That said, I do feel that, if and when you can be trying to be positive is important.

How do you stay positive? Let me know in the comments below!