Using my kryptonite to help others
It’s been a while, I know. I decided I needed to take a break from blogging, so this is the first post I’ve written for months, on any platform.
In a previous post, I mentioned that I used to be a complete technophobe (my kryptonite 😉) and by facing that fear head on, I’ve made it one of my superpowers (the 20yr old me would have never believed it! 😄). The same can be said for other challenges, because a lot of the time, it’s about mindset (not always, I absolutely recognise a person with mental health problems cannot be told to just think differently to ‘fix’ themselves, for example).
First, you have to accept your kryptonite. Whatever that might be.
My other kryptonite (the one I usually keep quiet)
I’m writing this to raise awareness and this is about to get very personal.
I don’t often share personal stuff in a public space, but after having over 3 months off work, so that I could benefit from some treatment, I know there will be a lot of questions about why I’ve been off work, from those who don’t already know.
Before taking that sick leave, I was doing too much and dealing with too much. At the time I’d just found out a much-loved relative, was dying. I didn’t really sleep in September.
On top of that I was already completely and utterly exhausted because I have a complex and chronic invisible illness which can make everyday life, a challenge in itself. I don’t like labels and when you have an invisible illness, it can be ‘easier’ to keep it to yourself, rather than have to explain yourself all the time. And when I say ‘easier’, there’s nothing easy about living with and hiding, chronic illness. It’s exhausting. Still, it’s never easy to tell people, because invisible illnesses are difficult to comprehend, until you experience something similar yourself.
I mean, I don’t look sick, right? And I smile and laugh everyday too…
Then there’s the fact that some don’t know how to respond, or those who you hope will be supportive, aren’t.
So I’ve always adopted a ‘need-to-know’ approach to telling people and for those who do listen, try to understand and are supportive, I’m eternally grateful. ❤️ Don’t get me wrong, I have no desire to talk about my illness constantly, I prefer to focus on other stuff, just like everyone else. 😉
Despite that, I’ve always wanted to help other people in a similar situation and I can only do that, if I’m more open about it.
So here we go…
I was diagnosed with fibromyalgia in 2013, after a couple of stressful years of tests and appointments with long gaps in between. I’ll admit, I’d never heard of fibromyalgia before it decided to make an appearance in my life. When I think about it, it has probably always been there, showing up on occasion since I was a teenager, in its various forms. And it shows up in all kinds of unexpected ways and sometimes, when you least expect it. One thing’s for sure, life is never boring with fibromyalgia.
What the heck is fibromyalgia?
UK Fibromyalgia defines fibromyalgia as;
FMS (fibromyalgia (fi-bro-my-Al-juh) syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.
That’s a very crude and basic definition because people with fibromyalgia often suffer from a whole host of other delightful issues (with different sources reporting approximately between 240–270 symptoms) including;
- joint stiffness and swelling
- anxiety and depression
- increased sensitivities e.g. to food, touch, smell, sound, light, pollution, chemicals and temperature. Yes, even a change in weather can cause an increase in symptoms.
- sinus problems
- chronic dry cough
And of course, exhaustion can lead to brain fog (forgetfulness and lack of mental clarity). Plus don’t forget pain can manifest in many different ways, and in places you didn’t realise you could hurt without physical damage or disease; shooting, stabbing, stinging, burning, aching, throbbing.
The list goes on and medication can also cause symptoms (including increased fatigue and weight gain), but you get the idea. If you’re interested, Fibromyalgia Support Network Inc, Western Australia have produced;
The ridiculously long list of fibro symptoms (not everyone with fibromyalgia will necessarily experience all of these)
Fibromyalgia is not as well known in the UK as it is in the USA, where regular TV commercials deliver messages of miracle drugs which make everything better. They don’t. I’ve had some horrific side effects from some drugs.
Despite the lack of awareness of fibromyalgia in some parts of the world, Arthritis Research UK report;
…up to 1 person in 25 may be affected.
I’m not gonna lie, there are plenty of people who suffer so much more than I can imagine, but it’s also a pretty shitty illness and each person with fibromyalgia will experience it in different ways. So just because you know a person with fibromyalgia and have an awareness of their symptoms, capabilities and the tools they use to survive, does not mean you have any idea what it is like for another person with fibromyalgia and how it effects them, or what works for them.
It’s not fully understood. It’s one of those conditions which some ignorant types (including some medical professionals), think isn’t real. Still. Although thankfully, things are slowly changing.
If you have fibromyalgia or other similar illnesses, you really do owe it to yoursef to become an expert patient. Do your homework. Question and challenge your GP and consultants.
Fibromyalgia does not define me
The problem with labels is they can be used inappropriately to define a person and judge them.
I am more than my illness, but it is a part of me.
I don’t need anyone to make assumptions about my capabilities and anyone who tries to stick a lid on what I can do, will see me smash right through it. 😉 That doesn’t mean I don’t understand when it’s appropriate for me to say ‘no’ to things which are not aligned with my well-being. But that’s my decision.
Acceptance and understanding are important when managing a chronic illness. We have to be kind to ourselves.
Living with fibromyalgia
It has been difficult to accept that I have an illness like this for the rest of my life. There is no miracle cure. No drug eliminates all the pain. Nothing makes the flu-like fatigue go away. Believe me, I’ve experimented. A lot.
But I’m still me.
And taking a multi-disciplinary approach to managing my illness can improve symptoms.
I’ve always loved active, adventure travel and the outdoors. Those passions don’t go away, just because another challenge appears on the scene. I just have to approach them differently.
I was once told by a medical professional that it was unrealistic for me to plan a trek to Alaska and Canada. I didn’t, and still don’t accept that attitude because I’ve always preferred a can-do approach to life.
I did that trek in 2014 and it was amazing. Sure, I knew that camping (on rocky ground, I might add!) was going to be super-challenging for me (I’m like the princess in The Princess and the Pea), but I bought equipment to increase my comfort levels (and make camping easier and my luggage lighter), had a good supply of strong pain killers and paced my activity.
I also accepted I wasn’t going to do any challenging hikes, but that didn’t stop me from being there, experiencing Alaska, the Yukon and the Arctic, seeing loads of amazing wildlife (so many bears!! 🐻❤️), doing shorter (and easier hikes), having the time of my life and creating awesome memories with some amazing people.
It wasn’t easy but it was worth it.
And you know what? After a month away, I came back feeling and looking healthier. So I know lifestyle changes can make a huge difference for me.
There is no greater medicine for me than being outdoors in nature. OK, there are some occasions when the greatest medicine is in the form of a prescription pain killer cocktail, but I save those for special occasions. 😄
I may joke, but I appreciate that I am able to survive without needing that pain killer cocktail every single day. I know many people who are dependent upon taking higher doses and more medication, just to do simple things that most take for granted.
For those new to being diagnosed with fibromyalgia, it can feel like your world is ending. I’ve been there. But it does not have to be that way.
Surviving each day with chronic illness, can be an achievement in itself
You learn to appreciate the small things and stop sweating the small stuff, the things that don’t really matter.
It’s also made me a lot stronger. That sounds crazy because I’ve actually lost a lot of muscle mass during the last 5–6 years and people with fibromyalgia are often described as having a low tolerance to pain. I’m calling BS on that because we deal with more pain on an on-going basis than most healthy people can imagine. I had no freakin’ idea I could experience the range of sensations that my body does and I tolerate a heck of a lot of pain, thankfully most days aren’t too bad, for me at least. Despite that, I physically push myself more than I ever did when I was healthy.
Fibromyalgia has also taught me to focus more on wellness and to pursue a better work-life balance.
It is also the reason I had to re-assess my career goals, make changes to my role at work and explore alternative income streams; I can continue working full-time in a career (which I love), but in order to do that, the rest of my life is sacrificed, which is not a desirable (or healthy) approach in the long term.
In 2017 I will be making some big changes (which I will share when the time is right) and maybe that will inspire others in a similar position to myself, to make positive changes in their own lives too.
Life does not end with chronic illness, it just changes.
Find out more about fibromyalgia
- Arthritis Research UK: Fibromyalgia
- NHS Choices: Fibromyalgia
- Mayo Clinic: Fibromyalgia
- Fibromyalgia Syndrome website
- Fibromyalgia Action UK
- The Mighty: Fibromyalgia articles (a great source of inspiration, information and comfort)
- Expert Patient Courses/Programmes (self-referral in the UK) (highly recommend the fibromyalgia one*)
*UPDATE September 2017 the Fibromyalgia Expert Patient Programme (EPP) is no longer being offered in Leeds, but EPPs are still offered in many locations around the UK to support people living with chronic conditions, pain etc.