Ok, this week has just not been my week! As always, the wolf finds a way of keeping me on my toes. From suffering from my mental health to shingles to low iron, and now sinus trouble. However, just like always, I pull through it, and before long I’ve got a smile back on my face. He can knock me down for a few days or so, but I never give up fighting back! The lyrics to Katy Perry’s song, Hot N Cold, are like my relationship with the wolf. You never know how he is going to be each day. One minute we are getting along nicely, the next we’re fighting. This is why I try and live in the moment. You never know what’s around the corner!
Shingles
I feel it is important to share my journey of the shingles with you all, to help spread awareness. Before this week, I knew very little about shingles. I knew it was linked to the chickenpox virus and I knew I was at risk of it due to me being immunosuppressed. I was always told that I should not go near anyone with either chickenpox or shingles. However, that was all I knew and because of how little I knew about it, I didn’t get help straight away. Luckily, I’m ok, despite not getting my anti-viral medication within the first 72 hours of the virus showing its presence. (The quicker you get the medication in you the better the outcome.) Therefore, I’m hoping by sharing my knowledge, my experience will prevent you from making the same mistake if you were unfortunate enough to get the shingles.
Before I talk to you about my experience, I want to tell you a little bit about shingles. I apologise to anyone who already knows but I feel there is a lot of people who don’t know what shingles are. The number of people who I have spoken to this week about it didn’t have a clue what it is. To be honest, neither did I before this week.
A Bit About What Is Shingles
Please note everything I have learned about shingles is from doing my own research this week and I’m certainly no professional in it.
Shingles is an attack on a nerve, caused by the chickenpox virus. It can appear as a small circle or a band, depending on which nerve it attacks. It causes a rash and nerve pain. An average person with shingles can take 2 to 4 weeks to recover. However, sadly for some people, it can lead to long-term nerve pain. You can only get shingles if you have to have had the chickenpox virus. The virus then lays dominant in you until something triggers it. When it becomes active, it doesn’t come back as chickenpox, instead, it comes back as shingles. For it to become active, something has to trigger it. Stress, old age, and being immunocompromised are the 3 most common ways to trigger it. You can’t catch shingles from someone but you can catch chickenpox from them if you haven’t had the chickenpox virus before. Not sure why you should stay away from anyone who is immunocompromised or pregnant, but you get told to. Normally, you only will suffer from shingles once in your lifetime. However, you can get it more than once. After speaking to some of the Lupus warriors this week, so many people who are immunocompromised have suffered with them time after time again. I really hope this is not the case for me. Some of them have had some horrendous times with it. My heart goes out to each and every one of them.
My Story
Last weekend, I woke up on Saturday morning with a painful mark on my back. I didn’t quite understand how it got there. However, I just thought I must of grazed myself in the garden or out walking. So I ignored it as you do.
By Tuesday, the rash had continued to get worse. The pain was getting worse and it had become itchy. I got Alex to take another picture of it. It was hard to see for myself, as it was on my back on my left shoulder.
I could see by comparing the 2 photos, it has got worse. I was like ok, this is not just a graze. I still didn’t think much of it but the pain was starting to get to me. I thought ok, maybe I should just send my mom the photo as she most properly knows what it is. Her response was to get an urgent doctor’s appointment, with a lecture telling me how I should not ignore rashes especially since I’m immunocompromised, and how it could be shingles. I was like no surely it won’t be.
I rang the doctors and they arranged an emergency appointment with the doctor. Instantly, he knew it was shingles. He prescribed me Aciclovir for 7 days and asked if I have lots of pain relief.
Today, just over a week since my rash appeared, and over halfway through my cause of Aciclovir, my rash is starting to clear up. The pain is still there in my upper back, shoulder, and upper arm, but at least the rash is looking better. The pain is a consistent throbbing pain, which wears me out as the day goes on. I’m hoping the pain will go when the rash goes, and not hang around as it can do post-herpetic neuralgia.
My Iron Levels
Dealing with shingles is enough for one week, but of cause, nothing is that simple with the wolf. I had my monthly bloods on Wednesday. I asked for my ferritin levels to be tested as I was certain they hadn’t been tested in a while.
Due to my Lupus, my body doesn’t absorb iron very well. Therefore, quite often my iron stores get too low. I then get put on iron tablets to bring them up to range. However, quite often they forget to keep an eye on my ferritin levels, and like the last time I was on iron tablets, my iron levels got too high. Instead of reducing my iron tablets down from 3 to 1 tablet a day, they stop them. Of cause, my iron levels then drop. Again, nobody keeps an eye on them.
This Wednesday, I asked for my iron levels to be checked, as I had a funny feeling nobody had checked for a while now. No surprise, they came back low. My ferritin level was reading 11 ug/L when it should be above 20 ug/L. If it goes down to 10 ug/L or below you become anemic. Not only that, my red blood cell count came back only just in range. Now that does get tested each month on my full blood count. Looking back at my results, you can clearly see it was getting lower and lower each week. I guess it’s something I am going to have to keep a close eye on myself so it doesn’t get this low again.
I Was Feeling So Tired!
I have been feeling so tired all the time. I just thought nothing of it. Just thought maybe I was exercising too much, or it was just my Lupus, or because of my sinuses. I basically anything and everything, when really I should have known it could be my iron levels.
I guess just like my shingles with the pain in my shoulder, you ignore it and just think nothing of it. When you are that used to being in pain or feeling fatigued all the time, you just don’t think anything of it. But that isn’t the answer. I do think it’s important to learn what’s normal and what isn’t. Both my low iron and shingles gave me warnings yet I blocked them both out without thinking about it. This is something I need to work on and learn not to do. One day my body could be doing telling me something more serious and I will be ignoring it, thinking the wolf is up to no good again. It’s important to be in tune with your body at all times and question anything that isn’t normal.
Dermatology
I have my Dermatology appointment tomorrow morning, which I am so happy about. My face and hands have continued to get worse with my Lupus rash. Yes, my body loves rashes at the moment with my shingles and lupus rash! I’ve got a funny feeling he is going to up my Hydroxychlolorquine, which I am not 100% sure is the correct thing to do. The dose I am on is measured to my body weight by my rheumatologist and have never been keen on increasing it. But after speaking to Dermatology back in September, I know he wants to, as he said it should help to prevent my rashes. So I don’t know, I just hope he knows what’s right to do, and he doesn’t cause any more problems to my body. I will address my concerns if he does suggest so.
My Mental Health
Feeling a bit better about my mental health today. After speaking to some of my fellow Lupus warriors, they said their mood was affected quite badly when they had shingles, so maybe that’s why I have been struggling as I have. Or maybe it’s just a combination of everything? I don’t know why but it was awful. I felt so numb inside. Nothing was making me happy. I just kept crying and I didn’t know why. I was looking forward to shielding getting paused and getting back to work. I felt as though I needed that part of my life back, how will fix the way I am feeling? That bit of social contact and routine back, which is missing from my life currently.
However, on Wednesday when I informed work about my shingles, that hope got shattered. Partly because of me being so naive. I informed them about my shingles but at the same time, I thought after taking a week’s course of Aciclovir it would be cleared up. A bit like a bacteria infection with antibiotics. However, that is not the case with shingles. This was obviously all before I educated myself on the situation. I was told I will only be allowed back to work this Thursday if my rash has cleared up or crusted over. Basically, it has to be at the point were it’s not contiguous anymore. I do understand why. The last thing I want to do is make anyone else poorly. So I’m going to have to review it on Wednesday. So of course, that made my mental health worse as it was one of the only things I was looking forward to. But today I’m feeling hopeful. If it carries on healing like it is, by Thursday, I’m hoping it will have completely cleared up. It’s certainly looking miles better compared to Tuesday.
Anyways that’s it from me this week.
Until next week,
Goodbye for now
Emma
xox
