It's another diary entry today and another day to be grateful, celebrate the small and look forward to a brighter future. This is the 4th week since I experienced one of the largest flare ups I have had and I am still recovering, to the point where last night the rash came back and this morning I have the classic, hot, burning, butterfly rash. Mini flares during recovery happen and I have been very stressed of late, equally the sun is out....and we all know what that means......
However, I am still on the road to recovery, although it may be slow progress and one LONG, winding road. As always I have achieved many things since my last flare up, some small and seemingly inconsequential, some huge achievements, but all equally worth a little victory dance as I write this. So here are my weekly achievements for this week.
I have begun to eat fairly normally again.
One of the most difficult things bout flare ups is how much they kill my appetite. During this last flare up I lost 4 kilos in 2.5 weeks. That is quite a lot in reality and although many of us wish to lose a little weight every now and again, this is not how I want to do it. The almost complete loss of appetite I feel during a flare makes recovery harder as I am not getting enough energy to continue to function normally, so the reality is this really is a catch 22 symptom. I want to recover but I can't whilst I am unable to stomach food.
Slowly my appetite has been returning, each day I am beginning to feel actual hunger and my body is beginning to tell me when it needs food. This morning for example, I was hungry at 6am, a feeling i have not had for over a month now. So I am back to eating 3 meals a day. I am not quite at the point where they are large enough yet, but there are 3 of them and I feel great for it. My energy levels are creeping up even through the fatigue, I feel healthier in general and although I haven't regained any weight, I am able to do a little more exercise. WELL DONE ME!
I spent an entire day out and about.
Last Saturday I spent a lovely day with too of my nearest and dearest, something that hasn't happened in a very long time. I was convinced that I wouldn't make the day at all; lack of sleep and a week of work under my belt, I felt like I was carrying around the weight of the world in fatigue. I left the house at 10am not knowing whether I would make it to midday as I live in the city and there would be a lot of walking and travel involved. Needless to say, when I met up with everyone I was exhausted, BUT I was happy.....and that can overcome any negativity and tiredness. By the time I looked at my watch most of the day had gone.
We sat, we chatted, we drank coffee, we laughed, I cried I think at least once and I had one of the most normal days I have had in months. I had forgotten about the fact that I am ill to such an extent that I got home and although physically I wanted to collapse, I began doing a little living room dance. the smile on my face lasted all evening. In total I was out of my house from 10am until 5.30pm - that is one heck of an achievement and just proves the power of having people who love you around you.
I read 2 books and watched 2 great documentaries......all the way through.
One of the most annoying issues to have come from my flare up is a worsening of my CNS (central nervous system) symptoms.....the most obvious being the brain fog. My memory and lack of concentration has been so bad that I have given up on watching films, I have quit books half way through and I have spent hours just sat there twiddling my thumbs as I could not do anything at all.
This last week has seen a return of my concentration skills....at least to a point where they are now manageable. I have completed 2 books and started another...oh the joy I felt getting to the end of the first one...it was a small achievement but important none the less. On top of this, I have watched two very interesting documentaries from start too finish. I mean I can't really tell you what happened in them as I have very little memory, but I did watch them, maintaining concentration to understand what I was watching and process the information. I feel like I may finally be returning to earth after a battle with the lupus aliens!
How have you been this week?
