I am not going to lie to you, the last few weeks have been tough. I have been feeling unwell with a host of symptoms old and new. Today has been a better day and I wanted to get a post out, albeit short and sweet.
With this in mind, I wanted to hone in on enjoyable things to do when you are living with chronic illness. As always these things are dependent on energy levels and what symptoms are bothering you at the time, BUT it is always worthwhile having some things in your back pocket for those better days.
I wonder how many of these activities you can relate to when it comes to finding enjoyable things to do. Maybe you have your own that you would like to share….
It’s a new week and therefore a new instalment in my ‘Living with…’ series, and this week we are talking about Fibromyalgia. You can view previous posts in the series about Tourette Syndrome here, PCOS here and UCTD here.
So let’s get started on life with Fibromyalgia. Fibromyalgia is described by the NHS as a long-term condition which causes pain all over the body – but trust me it is so much more.
As well as pain, people with Fibromyalgia can suffer with fatigue, stomach problems, headaches, muscle stiffness, pain sensitives, dizziness, cognitive issues such as brain fog and these are just a few of the symptoms.
Fibro is notoriously difficult to diagnose, but more than that it is a condition which is hard to get significant recognition for.
When and how I got diagnosed
Fibromyalgia was a diagnosis I received around the age of 27. Like a lot of people with this condition I was ill for a very long time before I was considered to have something more going on than just being stressed out. My initial symptoms were dismissed on a regular basis by health professionals who believed I was simply burning out from work, but I was becoming more and more unwell. So unwell in fact I became like someone in my 80s and not my 20s. It affected my ability to work, to socialise, in fact my ability to do anything.
After much back and forth with the doctor and referrals to the wrong clinics, I was eventually diagnosed with Fibro by a Rheumatologist and discharged from their care the very same day.
What I find different with Fibromyalgia
Fibromyalgia is the condition I have fought against the most out of all my conditions, purely because of the lack of support available. Whilst the majority of my conditions are invisible on me, I have found Fibro itself invisible in the medical world too. There seems to be no form of treatment other than self-management, no productive advice and no guidance on where to go after diagnosis. This of course may very well be different for others – a lot of the time these things are based on location, getting understanding doctors and local facilities available – this is just my personal experience.
What I wish people knew about Fibromyalgia
That Fibro is a condition that fluctuates. Therefore it is possible to have ‘better’ days where you can do more on some days than others. However this doesn’t mean you are suddenly cured or like some people believe ‘are not as ill as you make out,’ – the reality is a good day for me isn’t the same as a good day for you, it is just a better day for me which isn’t the same thing.
The most difficult thing about living with Fibromyalgia
No doubt it is the endless symptoms attached to it. Having such an exhaustive list of symptoms is not only exhausting in itself to self-manage, but it is the never-ending factors that can set symptoms off. From the weather (both hot and cold), stress, anxiety, a bad night’s sleep, getting too much sleep, walking too much, not walking enough – the cycle can be constant.
What has Fibro taught me?
That I am way stronger than I ever give myself credit for. Fibro literally turned my life upside down and I lost everything from my job to my independence, yet I am still going. Yes I am still in the same position, but I am trying and that is all any of us can do.
For more advice on any Fibro symptoms (or symptoms related to any of my other conditions) check out my symptom section here where I give tips on things I have found helpful. Remember to always check with a doctor before trying any new suggestions.
XX
New instalments in the series are now available – click on the condition to find out more: M.E/CFS and Mental Health.
February is International Boost your Self-Esteem Month, so I thought this week I would talk about just that: self-esteem.
I was always someone who suffered with shyness growing up, and a lack of confidence. Someone who always wanted to be in the background. Nevertheless it was an issue with my self-esteem which was truly holding me back. It was how I viewed myself and my abilities which had the most damaging effect, because I never felt enough to anyone anywhere. It took me until my 30s to fully get to grips with my self-esteem issues and see the bigger picture, but there are times even now when I fall back into old habits. So, this blog post is a reminder to myself as much as everyone else to why boosting self-esteem is so important.
What is self-esteem? Self-esteem is an evaluation of your own self-worth, essentially the opinion we have of ourselves.
When somebody suffers from low self-esteem it can hold them back from doing things in life they want to do, make them believe they are not capable of success, make expressing their needs difficult, make them believe other people are better or more worthy than them, make them critical of themselves and overall give people a feeling of not being good enough.
Boosting your self-esteem – especially when you have been used to feeling/thinking something for a long time – is a working progress. It takes time, patience and a lot of kindness to yourself, nevertheless here are my top tips:
Learn to say no – When you are a yes person you are putting other people’s needs before your own and this needs to change. To boost your self-worth you need to do what feels like the best option for you, and if that means not meeting up with a friend when they want you to then that is what you should do. To begin with people may badger you because they are so used to you saying yes, but the more you do it the more authority your voice will have.
Avoid focusing on negative experiences – Every time you think about something that has gone wrong in your life, you are emphasising the thoughts of not being good enough. The thoughts that you must be the problem or that it went wrong because of something you did. Acknowledge the event of course, but then leave it where it belongs: in the past.
Stop comparing yourself to others – One of the worst things you can do when it comes to self-esteem is compare your life to others (guilty as charged!). We are all on different paths at different times juggling different challenges, therefore how can your life be exactly the same as someone else? Living with chronic illness, it is hard not to see other people your age and see where they are in life in comparison to you – so don’t! Avoid social media searching and finding reasons to believe other people are better than you, instead focus your energy on yourself.
Learn about yourself – Rather than criticising yourself, why don’t you praise yourself and write down the positives in your life. Having low self-esteem can mean you have spent so long beating yourself up that you probably don’t really know yourself at all. What are you good at? What are your hobbies? What have you achieved? We all have things in life to be proud of no matter how small. By learning about yourself, it can remind you why you are good enough and change your opinion of your self. Read my post on gratitude lists for more ideas here.
Understand there is no thing such as perfect – The reality of life is nothing can be perfect all of the time, if ever at all. By holding high standards of where you think you should be or who you should be like, you are always setting yourself up to fail. Then when you fail you are confirming to yourself that you are not good enough and reinforcing your low self-esteem. Realising life is a learning curve in which you can only do your best in and that no situation will ever be 100% will help you regard your worth.
I hope you find these tips helpful – I for one will be reminding myself of a few of these things again. If there is anything you take away from this Boost your Self-Esteem Month make sure it is this: Know your worth and that you are good enough no matter what.
Me, Myself and Chronic Illness Blog 