I’m at home this week after a fantastic time in North Wales, celebrating my birthday. We visited the place with the longest name on the European map, lots of beautiful lighthouses, camped at some of the most incredible camp spots with Casper, visited one very tall waterfall, and had one epic day climbing Y Garn via the Devil’s Kitchen.
The Sun And Lupus
Last weekend, when I wrote my weekly blog, I talked about how I wasn’t feeling that great. How my Lupus had flared up slightly. I slowed down for 2 days, doing more touristy things, and less hiking. As much of it may have helped to have that bit of rest, I soon realised what the real issue was. It was the sun!
Ok, I know this isn’t new news, how the wolf and the sun just don’t mix. We know that from the number of rashes I get. But this holiday really reminded me how much the sun does have an impact on my health. As we headed back to Snowdonia from Anglesey, the weather changed and so did my health.
While I was in Anglesey, the sun shined, the days were warm, it was that ‘perfect holiday weather.’ However, each day the sun shined, my health deteriorated. The minute the sun stopped shining, the sky became overcast, my health improved. By the time I arrived back in Snowdonia, to finish off our trip, my health was so much better. To a point I didn’t need my strong painkillers anymore and I was able to climb mountains once again. It was crazy how quickly my health changed, but it also reminded me how sensitive my body is to the sun. How true it is, when doctors tell me constantly, I must avoid the sun as it will only lead to flare-ups. I really do hate it sometimes, when the doctor is right!
It’s crazy to think how much an impact the sun has on the wolf. I know it does, I’ve been in these situations so many times before. But it’s also one of the things you can’t really control. What was I meant to do on the days the sun shinned? Stayed in Casper all day long and hideaway?
My Raynaud’s Attack
It’s been a while since I’ve had a Raynaud’s attack. In fact, it’s been that long, I forgot how painful there actually are!
I used to suffer a lot as a kid with my circulation, high up in the mountains. I always remember once, in the Swiss Alps. We had just been in a hail storm, high up on the mountain pass. My little finger had turned completely white. I stood there for ages trying to wiggle some circulation back into it. It was pretty scary at the time.
My mom use to always say to me, I must have Raynaud’s but I was never officially diagnosed with it. It used to really affect me in the mountains. My fingers would often get so painful. I would always have to make sure I had a good pair of insulated gloves packed in my rucksack. Never in a million years as a kid, would I have thought my circulation was linked to me having another condition.
I always remember the time I was diagnosed with Lupus, at age 21, and my consultant asking me about my circulation. It was that day when I found out that Raynaud’s and Lupus are linked.
Please note: I’m not saying all cases of Raynaud’s are linked to Lupus. Only a very small number of cases. If you have Lupus, you are more likely to suffer from secondary Raynaud’s, which is what I have. But again, not everyone with Lupus has Raynaud’s.
On Tuesday, we decided to climb Y Garn via the Devil’s Kitchen in Snowdonia. Absolutely incredible walk! My smile didn’t leave my face for the whole entire walk! Highly recommend it and will be writing a full walking guide for it. However, I only recommend it for experienced walkers only. It contains scrambling, ridge walking, and good navigation skills. You also need to be very physically fit, as you climb above 3,000 feet. Please do not attempt it if you don’t tick all these boxes. Sadly, you see far too many cases of this recently. Not only do they put themselves in danger, but they also put other people in danger too, who help to rescue them.
I got to the top of the famous Devil’s Kitchen. For anyone who doesn’t know what it is, it’s basically a rock face you have to scramble your way up. Because I was concentrating on what I was doing the whole way up, I didn’t realise how cold my hands were getting. It was only when I went to grab my bottle of water, I couldn’t undo the zip on my bag. The pain in my hands was so bad, I couldn’t do anything with them. Just putting a pair of gloves on them to warm them up, was a job and a half. This moment reminded me of the past as a child when I struggled with my circulation. 20 years later, nothing has changed!
It was one of the moments were I got angry at myself for letting my hands get that bad. But at the same time, I didn’t do it on purpose, so I tried to stop being so hard on myself. At the bottom of the Devil’s Kitchen it wasn’t that cold, but at the top, once gained height, it had got a lot colder. Each rock I was scrambling up, was getting colder and colder, as we gained elevation. And because my body was warm from climbing, I didn’t notice how cold my hands were getting until it was too late.
The views going up Devil’s Kitchen:
I’m Proud Of What My Body Can Do
Climbing mountains has always been second nature to me. I’ve been climbing them since the day I could walk. One of my first pairs of shoes was a pair of red walking boots. When I become ill with my illness, climbing mountains became a bit more of a challenge, but still could do them. 3 years ago, climbing mountains was taken away from me altogether. I felt completely defeated by the wolf. This really had a big impact on my mental health. I felt sad like a part of me had been ripped away. I had become a different person, a person who I didn’t want to be.
Today, I’ve got my control back. Some days aren’t easy and have to give a good fight to win. Every now and again, I am defeated, but that’s ok. The wolf doesn’t like to go unnoticed for too long. Every time I reach a summit of a mountain I will always treasure it. Something, I will never take for granted as I did as a kid. Reaching a summit of a mountain without an illness is an achievement. Reaching a mountain with a chronic illness is something else. And I’m proud of this. I’m proud of what my body can do with a chronic illness.
Because you have a chronic illness, it doesn’t mean you automatically can’t climb mountains, as some people do think. Not just mountains, some people think you can’t do anything with a chronic illness. Anything with a chronic illness is harder, but when you achieve it, it’s that bit more rewarding.
You also need to remember a lot of content on social media is just highlight reels. You post the good and not the bad. You may see me summiting the 10th highest mountain in Wales, Y Garn, or doing other great things. But you didn’t see that aftermath. How I went to bed at 8 pm on that day. Or the suffering I go through with my stomach every night. The strict food diet I am on. Feeling suffocated from stomach acid being trapped in my throat. The bad heat rashes on both hands that I’ve had all week from the sun. Falling to sleep with an ice pack on my hands to cool them down, but attempting to keep my fingers warm to prevent a Raynaud’s attack. My hair loss. My muscle weakness in my eyes on an evening or when they get tired. The pain in my joints. The cramp in my muscles. My memory problems, my brain fog, which then left me in my tears on Friday night, when I couldn’t remember what day of the week it was when I got home from work. No matter how hard I tried to think, I couldn’t work it out. I thought to myself, this is what my Grandma went through with her dementia. She used to burst into tears and get upset when she couldn’t remember things. It’s horrible! And this list just goes on!
All this happened last week but it’s ok, I accept it as that’s my life living with my illness. A lot of it tends to happen in the evening. So I don’t mind. If I can have a good day, I can accept suffering a bit in the evening. As I do suffer most evenings, I try not to plan things then. It’s also a virtual rest time for me. If I don’t get it, it can have a knock-on effect for me the next day.
I Love Nothing More Then Helping And Giving People A Bit Of Hope
One thing I love about being a content creator/ influencer (even though I hate that word) is the messages I get from people. I’ve given newly diagnosed Lupus patients hope. knowing their life isn’t over because they have just been diagnosed with Lupus. They see what I do, and how I can still enjoy doing some of the things I love, despite having to pop out over 25 pills a day and have multiple diagnoses. I always explain to them, it’s more about learning how to manage your illness. I always explain it can take time and a lot of trial and error, but you will get there.
I have written a book on how I got my Lupus under control and how I manage it, to allow me to do what I love doing. It is now in the final stages of proofreading. Hopefully, it will be out for Christmas. I’m hoping this will help so many more people, give people hope, and help people get a better quality of life while living with a chronic illness. It’s a book I wished I had 10 years ago!
Anyways, that’s it from me now. Got my 3rd load of washing to hand out on the line. Why is it whenever you go away on holiday, you have twice as much washing then if you were at home all week?
Until next week
Goodbye for now
Emma
xox
P.s. If you would like to be notified each week when my blog goes live and have it sent straight to your inbox, please subscribe here:
