I’ve not been well recently, a couple of weeks ago I found myself in A&E so lets chat about my thoughts after that and I share some coping skills for when you are flaring.
I will be honest, when I went to the GP I did not think he would send me to the hospital, I had a list of symptoms I had since covid. One of those was chest pains, but I knew it wasn’t my heart instead I was pretty sure it was costochondritis, or intercostal muscle cramps.
However, because it was in my chest, the GP immediately sent me to the hospital to be checked over. Now, I did know that having my heart checked would be a good thing, especially as we have lost members of my husbands family to heart attacks and it would put his mind at ease.
The problem is, as someone with certain chronic illnesses, Fibromyalgia and ME, there are many doctors and nurses who assume we are faking. These healthcare professionals can be rude, refuse to treat you or even make comments to your face.
These past experiences have left me often feeling scared or putting off going to see doctors for help even when I know I need it. Thankfully the GP I saw this time was kind and took me seriously, but when I got to the hospital emergency department I was feeling overwhelmed and anxious.
By the time I was seen by the doctor there, I had been given an ECG and they had taken blood and I was scared as to what he was going to be like. With great relief I can say this doctor was amazing, he knew about EDS and the possible affects it can have on my heart. He also knew about intercostal muscle cramping and after asking questions was leaning towards that as a diagnosis.
However, he took the time to do a chest X-ray to check my aorta was in the correct place and is the correct size (which it was). After realising that my heart was good, he said he would write to my GP practice to suggest I have a vascular team follow up and keep an eye on me. He also prescribed me diazepam to be taken for this pain to relax the muscles when this pain happens and will tell my GP to do the same.
It was a really positive experience and gave me hope that younger doctors might not be as bad as the older for assuming we are faking or addicted to pain meds.
My GP had also sent me to a dermatology appointment for a suspicious mole, it has been giving me problems for a while and I needed it to be looked at. I was again worried and anxious, but the doctor was so funny and kind that I felt refreshed, plus the mole was okay yay!
But to say I have been feeling unwell for a while has been an understatement, I have even had to change how I record my videos and my upload schedule over on my YouTube channel. My chronic fatigue, that comes from a couple of my chronic illnesses, is the thing that has been bothering me the most. It stops me from doing a lot of the things that I love and I honestly feel so frustrated and annoyed when I cannot do the things I want.
Coping skills for when you are flaring:
Flaring of symptoms or new symptoms can be bought on by many things, and it is often nothing you can control. Anything from temperature or weather changes, to a change in routine can be to blame but it is always something that brings a mixture of emotions, so here are some coping skills for when you are flaring:
- Keep busy – now, by this I do not mean start cleaning, or exercising or doing things that will make you feel worse. What I am talking about it relaxing little hobbies that you can do while you rest, for example colouring in, binge watching a TV show, catch up on some movies, knitting, or crochet. Hobbies like this can really stop you getting caught up with your thoughts and worries.
- Mindfulness – I am never going to stop with this, whether you lie in bed with a Yoga Nidra on and rest, or sit in the garden with a cup of tea and take in nature. Mindfulness simply means being in the moment and not getting caught up in worries or depressive thoughts. It has been the most useful tool I have learned in my life and I will never stop trying to get you to try it too!
- Use your aids – Yes, use that wheelchair/walking stick, bath chair, stair lift, heating pad, whatever you need use! This is not a time to feel like a failure because you need a wheelchair, or like needing help from a relative is giving up. These things are made and used because they help us, they make our lives easier to manage and stop our bodies flaring even more so use them!
- Ask for help – I think most people in the chronic illness and disability community have some form of medical trauma. I have spoken a little about my own here in this post already, so I know how you feel. But, if you have new or worsening symptoms ask your medical team for help whether it is just a check over or for more medication, if you need it go get it.
- Talk – this one is a big one, as an advocate for we chronically ill folk, I have a small circle of people I can talk to. Finding safe online spaces is so important so whether it is a YouTube channel you love, a Discord server, a Facebook group for your illness or just some friends you met online, talk. Find your tribe and ask for help, or advice or just have a moan it is so important because the people around us might not always understand.
I really hope that you are not struggling right now, but as the weather warms up you might find your body start to grumble. These coping skills for when you are flaring are what work for me, and I hope they will help you too.
Thank you xx