Firstly I'm so sorry I didn't post yesterday....it was the epic adventure day and I was utterly exhausted! However by leaving it a day I can do the post justice.
Today I will share my tactics for beating back the Lupus when you have a full day of parties, maybe a wedding, maybe a birthday or even a holiday! Whatever the occasion, these are the times that I truly have to prepare for well in advance.
So here are some tips that I have learnt throughout my journey....I hope they help!
The day before any event.....
I suffer from anxiety attacks, especially when leading up to something that I know will be tough on me physically. So the day before I do anything I have to rest my mind as well as my body.
On Friday I literally lived the life of a hermit...apart from my hospital appointment and hair cut. I had to cancel seeing people and spending time with loves ones because I knew I needed to be alone. I know that sounds strange but it gave me precious hours to rest and not worry about anything!
I did no cleaning, I did no cooking, I just sat there, under my blanket and watched rubbish films that made me smile. This helped to prepare me for my journey on Saturday and gave my body a well deserved break.
The morning of an event....
So, yesterday morning was the day of a very special someone's 30th birthday. I knew I had to leave my home by 9am. So I had to set myself enough time to get up and dressed in a relaxed way! My alarm went off at 5.30am and gave me an hour to lie in bed with a cup of tea and my book. I need to wake up in a fairly naturel way when I have traveling to do because I get very panicked by organising myself due to the brain fog.
After my rest period I have myself 1 hour to get showered, do my make up and get dressed. I time everything so that I can focus, other wise I shall be distracted and get nothing done. Once the hour is up I have another rest period of 30 minutes...clear my mind and rest my body!
I continue this trend until I am ready to leave. This is when I grab my pre written lists. Yesterday's reminded me to pack my medication, being the cake I'd made and check all the appliances before I left.
Whilst you are at the event....
This is where things get tricky and more often than not, you will get tierd and grumpy....it happens and is allowed!
Firstly make sure there is someone there that can help you of needed. This could be a friend or even someone you've just met. Explain that you are poorly, you don't have to say anything else, but at least that way someone can be there if you need to leave.
Look for the periods when you can rest throughout the day. Yesterday involved a morning within a comfortable flat and then an evening out and about. I knew I had to rest during that morning....this was the time I could sit and let my legs have a little sleep.
After this I had to get a little creative. There was a sit down meal, this is perfect but I had to walk there, not so perfect. After the walk there I sat straight down...this was needed even if others may not have understood. By the meals end, because of the brain fog, I was struggling to remember names and even hold conversations with ease.
I knew everyone else was heading off for a night of bars and drinking and every part of my mind wanted this too! I wanted to join in, dance, laugh and eat a takeaway at 2am. The issue was that my body was clearly telling me it was done. It had reached it's limit and a pain storm was heading my way. I hate leaving early, it's a very lonely thing to do, but I had to and because I listened to my body I was able to head straight home and straight to bed.
So that is how I deal with big days...lots of planning, lots of observing and certainly lots of listening to my body. Sometimes it takes the edge off the enjoyment but it's how I have to live.
