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!

Fibromyalgia and Me

In the first few months of this year, I was struggling with something that I didn’t want to speak about. A few years ago I broke my spine and in theory, it should have healed in 6 weeks and been a lot better within a few months. Then it didn’t… I had physiotherapy, acupuncture, had a routine by the rehab team, spinal injections the lot. It didn’t get better.

Test after test showed nothing, I was exhausted and in pain which was taking over my entire body. I was told that the spine wasn’t the cause but why did it hurt so much? I was absolutely miserable. Then I watched the Lady Gaga documentary Five Foot Two and it changed everything. It all clicked into place, I had Fibromyalgia.

The NHS website describes Fibromyalgia as:

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

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

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • 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

One of my best friends, Sarah, also has Fibromyalgia, she’d hinted it was something I should look into but I didn’t want to face it. I didn’t want a chronic illness (I know, logic wasn’t working here). Until one day I went to see the kindest doctor I knew and broke down. I told her every ache and pain, the tiredness, the stress. The fact I was hiding from everyone.

It’s not easy to get a diagnosis, there’s not a blood test or a scan. I was referred to a Rheumatologist which had a long wait. I took the day off work for the appointment and went with my Mum. I was an anxious mess, what if he didn’t believe me, but what if he did? It’s a hard set of emotions to explain.

I shouldn’t have worried, my doctor was incredible. We had a long chat and he checked the key points on the body which would lead to a Fibromyalgia diagnosis in combination with other factors.

The thing is, without Lady Gaga (and my friend Sarah) I probably would have had no idea what was going on with my body. More importantly, seeing people who are so successful (Gaga) and kind (Sarah) but still living with this condition gave me hope. Hope that I’d manage all this pain and anxiety, that I could still be a boss babe despite it all.

I’m hoping that in future I’ll be a lot more comfortable to talk about living with Fibromyalgia. It’s taken me a long time to process and feel comfortable about it myself. BUT I am still me, I still achieve what I want to and I still kick ass.

Thank you so much for reading!