Lupus hasn't beaten me this time!

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!

6 Replies

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  • Hi Dryad, So lovely to hear that you had a great hol and I bet it felt fabulous body boarding in the sea with your sons. Particularly after your difficult time before you went away with being on steroids:( I always call times like that together as "Making memories" and it sounded a fab break. I completely understand what you mean when you say it revitalises you as I felt exactly the same way with my recent break to the Black Forest. I felt empowered for trying new things (walking further than I had this year due to flares etc) and just laughing and spending time with my husband. Oh the beer and snapps helped too, hiIc, hic. I too had to pace myself when away and have days that were very easy in order to prevent flares etc. When I have times like this I can almost convince myself that nothing is wrong and even think that this is all in the mind.....then bang it all returns, the aches, pains and weakness that is familiar to us all. You were right to rejoice in your ability to make it to see your dad, even in your circumstances because you still got there:) So lovely to hear that you had a fab hol. Take care Marion x

  • Glad to hear you had a good time away in the Black Forest, it sounded fun. What a difference a break makes! It felt like a holiday away from my poorly self too. When I got home I felt in denial about having lupus ; "I've just been body-boarding so I can't really be ill!". I even stopped taking pain killers for 2 days after I returned.. and then regretted it by the third day! I realised that I certainly still had lupus and I shouldn't make that mistake of stopping medication!! Thanks for your comments xx

  • Just wanted to say really pleased for you, especially after such a rough time. It is good to hang onto the good times, kind of store up the victories to keep you going through the rough, if that makes sense, and happy birthday! hope that things improve a gain soon. Take care of yourself,

  • Hi Flutterby, I was just catching up on older posts that I missed while i was away, and I found yours 'everything is rubbish'. I hope you are feeling a little bit better than that dark place? I agree it's so important to hang onto the good times and store up the victories to keep us going through the rough. What wise words! I've really come to understand how depression is such a part of this illness and how irrational it can be. I feel like it creeps up and suddenly "BAMM!" it's got you and you feel trapped in a downward spiral. So yes I am hanging onto my happy memories of being on that body board and laughing with my kids. It has helped me get through this week. I hope you have a chance to have some fun soon -even if it's simply watching a funny movie. Take good care of yourself xx

  • I too wanted to say happy birthday & well done for getting to Cornwall...bet the body boarding made you feel free & alive,try to hang on to the good times & know that positive time will come back again :)

  • Thanks for your kind words XX

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