My Weekly Lupus Diary

We’ve Finally Made Up

This week has been so much better! After having all that rest last Sunday, Monday morning I felt like a new woman. Well……..almost!

This week has been good. It feels as though the wolf has finally made friends with me again. Let’s hope we stay good friends for a while as I have a lot of exciting things planned for this month. I don’t have time to be poorly!

Yesterday, I got out for a lovely hike in the Yorkshire Wolds. It wasn’t a long one, and nothing too strenuous. It was so lovely to be well enough to get out again and be able to do the things I love so much again. The sun was shining and we saw loads of cute lambs playing around in the field. It was just lovely!

Still Have My Shingles Rash

5 weeks on, I still have my shingles rash. However, it is starting to finally fade away. I would like to say it’s not very painful anymore, but I think that’s just my Amitriptyline doing it’s job.

I’m in a very love-hate relationship with Amitriptyline. Obviously, it’s great for nerve pain, hence why I have been prescribed it. It’s also great for knocking you out on a night. I’ve had some of the best nights of sleep in a long while since I’ve been taking it. But the mornings are a nightmare. Getting out of bed and that first half an hour of the day I feel like a complete zombie. I need match sticks in my eyes just to keep them open! After the first half an hour of the day, a bit of fresh air, and some caffeine, I’m ok. I just hate not waking up with that refreshed feeling. But I know it’s not forever. I even tried taking Amitriptyline 2 hours before bed, which still makes no difference in the morning. I really feel for anyone who has to take it long-term.

The Wolf

As I mentioned above, the wolf and I have kissed and made up for now. It was quite strange how Sunday last week, I slept most of the day, feeling absolutely shocking. Then on Monday, I woke up, feeling completely different, feeling well again. My body obviously needed that rest to heal. I am so glad I listened to my body and didn’t fight it.

It was so weird on Monday. Normally I slowly get better day by day, not suddenly get better. I even felt well enough to workout but made the decision not to, as I knew my body was likely to be in a fragile state still, and I didn’t want to head backwards.

Since Monday, my week has continued to be good with the wolf. I’ve not needed to take codeine all week which makes me so happy. I’ve still been feeling quite tired, so been relying a lot on caffeine. However, I wonder if this is more to do with my sinuses, as they have been playing up most of the week. I certainly shouldn’t be tired after getting at least 8 hours plus sleep each night with this Amitriptyline. My sinuses were especially bad yesterday after my walk. I ended up falling asleep in the car on our drive back. I’m sure it’s all the tree pollen that’s affecting my sinuses at the minute. I am still waiting for my ENT appointment too. Even though not sure what help they are going to be if it is allergies that are congesting my sinuses.

Alex Has Had His First Dose

Alex had his first dose of the vaccine last week. He’s been allowed his vaccine early due to me. Anyone who lives with someone who is immunosuppressed is now entitled to their jab. For anyone wondering how to go about this, it was our GP who sorted it for us and booked him in for his vaccine. He has had the Pfizer vaccine and felt fine after his first dose, other than a slight headache, which was good news.

I’m looking at paying privately for an antibody test to see what antibodies I have from the vaccine. As I was so poorly after my 2nd dose, I’m hoping that means I do have antibodies. However, just for my own peace of mind, I want to find out. There are a few different companies that do them. I’m not 100% sure which one I’m going to go with. The cheapest one I have found is £37. I’ve seen another for £49. For immunosuppressed patients, they recommend getting a test 6 weeks after your vaccine. The test is called the immunity test and not the antibody test. The antibody test will only test if you’ve had COVID. Whereas the immunity test, tests for the spike protein in your body. I will put links on here for 2 different ones I know about. If you know of any, please feel free to let me know.

http://monitormyhealth.org.uk

http://testingforall.org

Exciting Plans For May

May is a month full of mixed emotions for us. It’s our 6-year anniversary on the 16th of May. It was meant to be our wedding on the 15th of May, after moving it from last year, but we’ve had to move it again until next year. But it’s ok, what’s more, important we have each other, married or not. Maybe one day our wedding will actually happen, but until then, I will enjoy my surname and enjoy having a fiance for a little longer.

In other news, we’ve got a new chapter starting in our lives next weekend. I’m sooooo excited! I haven’t felt this excited in so long! You know how I mentioned a few weeks back I have some big news to share with you all soon but didn’t want to tell you in case it all fell through or something went wrong. I am still a bit scared about telling you this week. I was going to wait until we had the keys in our hands. We were originally going to be picking it up this weekend, but after asking for extra things to be fitted onto it, including solar panels, it’s not going to be ready until next week.

I am going to tell you next week once the keys are in our hands and all the money is handed over. The moment I can say it’s truly hours. Until then, you most probably can guess what it is. It’s not a house, it has wheels, and we have a road trip planned for this month in it.

I want to call it Bobby or Phoenix, but still trying to convince Alex, who thinks it doesn’t need a name.

Anyways, enough from me this weekend. Got some more of Scotland to plan. Let’s hope the borders don’t close on us just days before travelling as they did at Christmas! I have a hospital appointment for my eyes next week. Hopefully, I get good news and not bad news.

Oh, I also need to plan an easy mountain to climb in the Lake District next weekend. Need an easy one as not sure how good my fitness is at the minute after spending most of April unwell! I was hoping to get my fitness up in April, ready to climb a Munro or 2 in Scotland. But of cause, the wolf had over ideas last month, as always.

Until next week,

Goodbye for now

Emma

xox

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