Here we are again, another week done and another list of positives to be taken from it. I have had a particularly hard week this past week as I have had an infection in my jaw bone and some pretty nasty bugs. It was so bad that I got zero sleep through the pain last Saturday, resorting to having to get up and walk around every couple of hours to try to distract myself. The pain was so bad I was physically sick, which let's face it, does not help at all. However I am now on the mend and looking forward to the Easter weekend of 4 days rest - just what I need.
I know from these previous posts, that the idea of what we have achieved has to come with a context. What I achieve each week is own relevant with my background, thus making it all too easy to undervalue. For you and many of us, we look at the everyday things and dismiss them as achievements because people without our illnesses do them so easily. Equally, all achievements are personal to you, what may be a huge thing for me, will be a small thing for you etc. Context is what is important here.
Even though I have been so unwell, I have still achieved many things that have been out of reach for some time. So to keep us all fighting and positive, here are this weeks achievements.
I have found peace with my body image.
This has to come first and has to be the biggest achievement I have made this week. As my body continues to let me down, I have over the past few months, begun to hate it. I hated it for letting me live like this, I hated it because of my rapid weight loss and gains, I hated it because I have wobbly bits where I don't want them, chunky muscular, swimmers thighs. Oh the list is endless. Most of all I was just disappointed that because it wont work with me I have had to endure many losses and that has left me feeling lonely and isolated.
This weekend I have been so very unwell, that I have been forced to rest which as you know, is something I find terribly difficult. However what the rest did was give me time to reflect on my body. I was able to change my thinking about how I look; I am not a 6 foot model for example. I am curvy, which will never change and equally the drugs I take have changed my body shape too. I have had to accept this and let me tell you, it is utterly freeing. Ii have started to head for clothes I haven't warn for years because I was worried I was too fat, too thin, that there was too much rash on show. I have decided to let it all go and that has done wonders for my confidence.
I went for a long walk on Sunday
Sometimes when we are so ill it is hard to remember that we can do things. I have suffered this of late, which for me has come in waves over the years. I lose confidence in myself and my ability to kick the illness up the bottom. So on Sunday morning, with the sunshine streaming through my window and on zero sleep, I decided that I had had enough of wallowing! I didn't want the lupus to win this weekend, I was taking back the power.
Through all the lack of sleep, pain and nausea, I got up and dressed. I found a map on Google that took me on a long but easy walk around my local area and I headed off. As it was sunny I made sure I was covered up, but cool enough to do some exercise. The route itself was truly beautiful; alongside the River Mersey, through a nature reserve and then back home. All flat terrain, so I didn't push my joints too far. The benefits were immense. the fresh air cleared my head, the sunshine made me feel at peace and the beautiful countryside took my mind off the pain for a couple of hours.
The total walk was approximately 6 miles, but it didn't feel like that because it was an easy route and one I will do again and again.
I have had some brain fog breakthroughs
One thing I am very proud of this week is how I have handled it. I planned what I could well in advance as I have had a variety of appointments and work deadlines. The past few weeks I was really struggling with my memory, to the point where I haven't really been functioning at all. however this week I have managed to remember 80% of things I needed to do and complete. I even got to my GP appointment early - for me that is a huge achievement. I have remembered what I have had to do at work, looked after my medications myself without being prompted by my phone or loved ones, I have packed my bag correctly most days...the list goes on it really does.
For such a busy day, I have really managed the brain fog very well. making more specific lists, coping with changes to the plans etc. Planning my time more efficiently has been one of the most helpful things, really working out my energy levels at certain times; honestly it has been a godsend. Part of this has been because I have joined a fantastic support group whose knowledge and caring has helped me to push through the week. I am so grateful to be starting a new chapter where I can manage the fog better, because out of everything this has been the hardest element to handle.
