21,694 members17,191 posts

What a wonderful few days :)

I think I may be like quite a lot of you SOOOOOOO relieved that the cooler weather is here.

I had an awful time during the summer feeling like i was going to collapse on the spot, hiding away indoors - turning into a total recluse, for some unknown reason my intolerance to the heat and the sun was so much worse this year. But I also felt like I was letting my family down all the time, as they would go out with their picnics and I hibernated at home.

But now that autumn is here I can venture out of doors - yay!!!!

I suffer from Raynauds too, but given the choice of the hot or the cold i would opt for cold every time.

Seeing as it was half term we decided to visit the local museum for a few hours, it was wonderful, I felt relatively normal wrapped up like everybody else in their coats and scarves. And I actually learnt something which made it even more worthwhile. I was tired afterwards but hey ho.

Then we were really adventurous and decided to visit Cotswold Wildlife Park. My partner very sensibly took the wheelchair, but me being the strong willed person that I am said not going to need it. (silly me)

I managed to walk past the zebras and rhinos and the camels, but then found I was sitting on every bench that we passed. My partner said enough was enough and that I needed the chair. But I carried on past the giraffes until after 20 mins I still couldn't get off the bench.

Now I expect like many of you, I really really hate using the wheelchair, but I had no choice but to give in and park my bum in it. And do you know what, once I had recovered a little from that horrible nausea you get when you are totally drained I had an amazing day.

I came home totally exhausted, nauseous and with legs like jelly, but with a massive smile on my face. It was wonderful.

Then to round my few days off, my 8 year old nephew came round to play board games for 3 hours. Naturally I lost, but aren't all nephews supposed to win??

Since then I have been totally exhausted and drained, my joints ache, I can only manage to potter round the house, but I really don't care. I have had the most wonderful few days with my family and that far outweighs the downside of feeling pants now.


1 Reply

Hello Tired Mum.

Good for you that you are doing a bit better. Earned fatigue is so much nicer than feeling wiped out for no reason.

But you broke the golden rule; spend only half the energy you think you have and invest the other in your recovery.

I found that my tolerance to the sun got worse when I started Hydroxy, it makes me sneeze and feel woozy. A cooler summer certainly is easier to deal with, but damp, cold and darkness are no great friends of mine.

I have a scandinavian snow suit for outdoor wear in the winter, and would advise anyone with lupus to get hold of one.

Be well.


You may also like...