I hope you are all getting a chance to enjoy the summer while it lasts? I actually managed to go away camping (in a comfortable camper van) in Cornwall for a week, which felt like a major victory for us this year! There were many times over the past few months that we believed we wouldn't be able to go due to my health, but thankfully the most recent flare calmed down on the 2nd day and I was able to really enjoy myself!
We had lots of time reading and resting, and watching films (our camping neighbours had a massive van and had internet!) and believe it or not I actually made it down to the beach 3 times, put on my fully UV protective wet suit, and went body-boarding!!! One of my sons really enjoyed it too and we surfed the waves laughing together! It was my 40th birthday while we were away and we made it to the Eden Project as I'd hoped, and my friend had baked me gluten free, sugar free cakes too(I'm still on that diet!) and sang me happy birthday.
This holiday gave me such a fantastic lift. My spirits rose so much and I started believing in life again, that perhaps I might have a happy fun life after all, despite lupus. I was really tired the week after we got home, but I didn't care, I just rested and read my book, pottered in the garden and felt happy to have had a great time.
Now I'm at that hormonal time of the month and I'm flaring again. It's been really hard this week. All this year the lupus has been mostly in my arms, with burning pains in my tendons and painful joints making it difficult to use my hands, so I've had to give up my artwork for the time being as it involves fine sewing detail. Now it's also in my legs and feet too making it painful to walk. It's been really tough to keep positive, but I'm trying hard!
Yesterday I'd driven into town to go to my acupuncture appointment and I realised as I started walking that I was going to find it really hard to get there due to the pain and weakness. It was horrible. I'd forgotten my phone so I couldn't call a taxi and I felt very vulnerable. I had brain fog too so it was hard to problem-solve in that moment. I just cried as I hobbled down the streets until I got there. The treatment made me feel stronger in myself and I was able to make it back to the car.
Later on I had to go to a very important meeting at my dad's nursing home and I knew it would be challenging on many levels, particularly walking along the long corridors. So I decided to dust off my crutches and use them to help me. Taking some of the weight off my legs did help, but it put a lot of strain on my already painful arms, so I used two wrist support straps too. What a sight I must have looked! But I didn't care, I thought of them as tools to help me and they did. I was able to make it to the meeting and take care of my painful body, and actually I felt more empowered for it. Lupus hasn't beaten me this time!