Hello! Hope you are all well!
This weather is absolutely gorgeous at the minute! Spring really has given us a fantastic start! We got all our back garden power-washed this week, ready for the summer. I did however manage to send the powerwasher up in smoke, not sure how. One blessing, it happened right at the end!
We Watched the Aurora Dance on our Annivasary!
Last weekend, we came from a week-long trip road-tripping around Wales, celebrating 3 years of happy marriage. We did the Cambrian Way in our campervan. It’s a route that goes from Llandudno to Cardiff, following Wales longest road, the A470. We had beautiful weather, saw hundreds of lambs, the clouds cleared just in time to see the partial eclipse, we did some beautiful walks, and the Aurora danced on our anniversary. It was perfect!
Sadly though, I wasn’t strong enough to climb any mountains this trip! The attempt of tapering down my steroids just before my trip, left my body weaker than I hoped for. I could only manage short 2 to 4-mile walks, up small hills. I know this may sound a lot to some of you, but for me, who used to be capable of doing a lot more mileage, up big mountains, it felt like very little.
The hardest part was being in Eryri National Park and Bannau Brycheiniog National Park, standing at the bottom of the mountains looking up. I wanted to be on the tops! But I kept reminding myself how far my body has come in the past year. How much stronger my body is now, thanks to my Belimumab injections. How I could manage nice, short walks everyday, which were full of beautiful scenery. And maybe on my next trip, my body might be that bit stronger to climb mountains again!
Here’s a little photo dump from Wales:
House Renovations
In between trips, recovering from a failed attempt of tapering steroids, which I will talk more about shortly, we’ve been renovating our house.
In February, we started doing the living room. Still not fully finished, but what a transformation we’ve given it! The inspiration for the room came from two of our favourite places to road trip: Scotland and the USA. Our mascot for the room is called Jessie, a Highland Cattle wearing a cowboy hat. We’ve put Alex’s old cowboy hat on the way, which he got on our honeymoon, in Texas, road-tripping along Route 66. The rug is a reminder of the days we spent in the Navajo region, exploring the incredible Monument Valley, Antelope Canyon, etc. And we treated ourselves to a new TV, the Samsung Frame, which is fantastic! When it’s not being used as a TV, it becomes a picture frame.
Here are some pics of our renovation:
This month’s project……the hallway/stairs/landing!
Tapering off my Steroids
As read above, the tapering of my steroids did not go to plan. Honestly, I’m absolutely gutted!
At the beginning of March, I dropped my Prednisolone from 7mg to 6.5mg. When tapering down long-term steroids, they say it can take about two weeks for your adrenal glands to kick in and start producing cortisol again. The replacement is no longer getting from the steroids. Sadly, my adrenal glands did not kick in like they were supposed to!
Each day, my body was getting weaker and weaker. Even though I had only dropped my Prednisolone by 0.5mg, I could feel the effect of living on low cortisol levels. I had all the symptoms of adrenal insufficiency. It was awful! I kept pushing myself through each day, telling myself, tomorrow might be the day my adrenal glands would kick in, persuading myself not to give up. But another day went by, and still no sign. Instead, I felt worse and worse!
Enough was Enough!
Just after my two-week mark, I woke up to my illness flaring. This was the day I knew enough was enough. I had put my body through a lot of stress, my adrenal glands were not performing, and I knew I couldn’t keep going. You have to be sensible, know how much you can push your body, and know when to stop. So, back on 7mg I am!
It took over a week to get myself back to feeling somewhat normal again. The first couple of days, I slept a lot. I felt sad! I felt like I had failed! But I had to keep reminding myself, I was told this could happen. I gave it my all. I really tired, but my body has been on steroids for almost 10 years. I’ve been on a dose of 7mg or above. So, as you can imagine, my body is very dependent on this Prednisolone.
Not sure what the plan is from here, but for now, I want to focus on getting stronger again, and have a good spell of good health!
Spring Covid Booster
I had my Spring Covid Booster jab on Friday. I felt quite tired and drained afterwards, but now coming out the other side. They always make me feel a bit rubbish afterward, which I know is quite normal. But recently, they haven’t made me feel as poorly as they have in the past. I remember the first few I had, completely wiped me out. Not sure if the more you have, the better your body gets at dealing with it?
Circulation
I’ve been taking my Nifedipine since the beginning of February, and honestly, I’m not sure how much it’s helping, if at all! My hands and toes are still very red, sore, swollen, and covered in chilblains. I keep having frequent, very painful Raynaud attacks throughout the day. The only thing I am noticing, my hands aren’t turning purple as frequently as before, but they still do. And my uclers have healed, but the weather has turned milder. I tend to suffer more with ulcers in the winter months than the summer months.
Best tip to heal hand ulcers the quickest I’ve found: cover them in Vaseline and then wrap them up in a dressing! Not only does it help to heal them faster, but I’ve found it helps massively with the pain too!
Lupus Rash
My face is a bit of a mess at the moment! Since coming back from Wales, I’ve had the typical Lupus butterly rash on my face. Probably from spending too much time in the outdoors, in sunshine, despite wearing factor 50 and a hat! It’s not like I’m sat out in it, asking for touble. I’m just ‘out enjoying life on holiday’! Out walking in the hills, exploring cute little towns, etc.
Since coming home, I’ve been back on my Tacrolimus Ointment, and my rash is slowly starting to die down. I am supposed to use it all the time to prevent the rashes from forming. But truthfully, I’ve been very stop-start with it! I don’t like to have to use strong creams on my face, unless I really have to. But I think I am going to accept I have to, unless I want my face to look a mess all summer!
That’s all from me this week!
Until next time,
Goodbye for now.
Emma
xox
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