I think so many of us, disabled or not, think that rest is wasting time or not being productive enough. I felt the same for a long time, but I have found rethinking it as rest is self care really helps stop me feeling guilty. If you follow me on Instagram, you will know that just yesterday was a bad fatigue flare day. I had also been feeling rubbish for a few days before so I knew that something was…
I think we have all had times when pacing goes wrong and end up doing so much more than you meant. It is part of living with chronic illnesses that cause fatigue, and so is the guilt! So I thought it was time we talk about this. Monday was a good day, they are rare and usually I take my time and do little jobs that are usually too much. I was good, I paced and managed a little yoga,…
I think I can safely say you are not alone in doing these things, I am as guilty of it as you are. But disabled community stop doing this in 2021 please? Can we move forward with a collective agreement to try and not do these things? I think we are all guilty of feeling like a burden, of feeling guilt or worrying too much what other people think. It is not something we do alone, but these things are…
Exercise has been important to me for many years now and for a long time I did yoga every day. Looking after my joints and muscles helps my pain and protects my hypermobile joints. But with increased fatigue, and moving house that changed and getting back to exercise has become a priority. I have found since moving and helping my mom, that my own pain and fatigue have increased. This was of course expected, but meant that a lot of…
Moving house is always stressful and difficult, even if you don’t have chronic illnesses it can take it’s toll. When fatigue flares it can leave you feeling frustrated and annoyed, or trying to push through so you can get things done. Weeks of packing followed by moving in and becoming a carer have left me struggling for energy. I live my life walking a tightrope between those things every day at the moment, frustrated and seeing how much I can…
As you know, if you have been following recent blog posts and you tube videos, I have moved with my husband to be a carer for my mother. This obviously caused a lot of worry, stress and change to my precious routine that helps calm my anxiety disorder. Finding a rhythm has not been easy for all three of us as we have tried to navigate this change. The dogs, Dexter and Gizmo, on the other hand have loved the…
Finding my feet recently has not been easy, moving in with Mom to become a carer while dealing with my own chronic illnesses never would be! My mother before now has been living alone in my childhood home, and trying to cope with Multiple Sclerosis. It has only been since moving in that we have come to realise that she hadn’t been looking after herself. Rarely showering because she was afraid of falling, no exercise and a diet of mainly…
Well the pandemic is still happening though governments are easing everything to make money again. We are in the middle of moving house just the contracts to sign and to sort out a completion date. And my dad’s dog who used to be mine died, so lets talk about dealing with stress with a chronic illness. I have to be honest and admit that I have been expecting a big flare, anyone with a chronic illness knows stress is a…
Oh yes it is that time of year again, and unpredictable British weather is causing pain! By now I should be used to it, I should be prepared and armed for all occurrences because here we never know what we are going to get! At the start of lockdown against Covid-19, it was hot everyone was moaning because they wanted to go outside and sunbathe and have fun. However, I had hayfever and the bright sun gave me migraines as…
There are a lot of things I am not good at, including riding a bike, but the main one is remembering dates, birthdays etc. I really suck at it, still it was impossible to escape my notice this month that it is all my illnesses awareness month! Ok not ALL of my illnesses, but three of them the ones I think of as being my main three. Ehlers Danlos Syndrome, Myalgic Encephalomyelitis (ME) and Fibromyalgia have all affected my life…