I haven't posted for about 10 months. Last I was moving back to our home after working away for three years. The move went well, we had almost 5 months at home, and being winter we got a lot of work done on inside of our house. It was fun and aside from the odd day on the couch it all went well. In March we went back to work. I volunteered to help out with office work where needed and within a few weeks I had helped myself into a very busy full time job managing two offices. It is very stressful, but I have made a difference and I am proud of what I have accomplished. After sitting on the side for three years I was afraid that My brain had gone to moosh but with a little exercise it has perked right up. I admit that there has been the odd Wednesday off where I took a rest day, but mostly I have worked. This past weekend our daughter got married, they are adults with children and planned and did 90% of the work themselves. We live about 500 klm away so left on Wednesday to help with the heavy work (well my husband helped with heavy work), they put up a huge tent in the back yard that covered the whole lawn, built a dance floor in yard, built a long table and a beautiful bar. The dance floor was new wood but the table and bar were built from wood they had got from the groom's great grandparents old farm house. It is going to be torn down this year so they wanted to have part of it in the celebration. The tent was so that I could go anywhere outside without having to worry about the sun, it worked great. My daughter believes that everything, even old wood, has a connection to us - there were lots of plants and flowers, rocks and crystals, running water (a fountain pond), it was all very beautiful and the outdoor service was beautiful too. My contribution to the preparations was cooking and cleaning for 12 people the three days before wedding.
So other than sharing with you a very nice weekend and catching up with some of my old friends on here, what is my purpose??
I had noticed that a few glands in my neck were a little swollen before we got there, and was feeling a little ragged while there but it was to be expected with everything going on, right? Sunday morning I got up with my face all swollen up, hardly able to open eyes. Company was coming to say goodby and I was hiding in my room because I looked so awful. The side of my head was on fire and my neck very sore. So my husband packed us up and we headed here to our real home for a week off. Monday I went to emerg (my doc was not in office) because of course I knew what was wrong but needed meds. Turned out my Doc was emerg doc for day, so worked out well. So I have shingles on the side of my head around my ear and partial down neck to back, my glands are swollen and sore, my face even after three days on prednisone is a wreck - eyes still swollen, butterfly dry hot and burning. Wait . . . . I am not finished. Yesterday I decided that I should wash the bathrooms down - that is not a hard job, I could do that. Was pouring some bleach into a bucket and it splashed up and went straight into my eye 😜 I immediately started washing it and with my husbands help kept rinsing for 25 mins. Waited about an hour then went to eye doc who saw me right away and said that I had burnt my cornea, if it gets better it will take about a week, if not well then I don't know what. What am typing is quite blurry for me so I sure hope it gets better. I don't think I will be able to work like this.
So, how was your week? My question now is has anyone had flare and shingles at same time, is flare a result of shingles, are shingles secondary, will my eye ever get better, is there really a Santa Clause? Sorry couldn't resist!
Take care all,
Love, Chapter
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Chapter
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So sorry to hear that you are having a very very tough time, whilst reading your post it seemed déjà vu .....now I understand also why I had shingles. Similar situation as yours, just moved to a new place, husband gone away to work. So I was keen to get the place tip top before he returns... Unpacking boxes, lots of going up and down stairs, hanging new curtains, shifting furniture, sorting bedrooms and kitchen in other words non stop. On top of that demanding full time long hours stressful job, lunchtimes at the gym....my poor body could not cope. Was constantly tired and had terrible neuralgia and pain in my neck...so lo and behold went to the dentist as I thought I had tooth ache referred me to Dr who sent me immediately to hospital where they diagnosed shingles and wAs kept for 8 days on drips and various drugs, in the meantime developed Bell's palsy too.
So to answer your question I think the vulnerable state that SLE puts our body in when under a lot of stress and pressure from overdoing things it reacted with shingles. in my case was secondary.
It never rains but it pours...hope you make a complete recovery from the shingles, we never learn to listen to our body when it has had enough. Be kind to yours, I have come to terms that it is ok to relax and do nothing and take things easy, easily said than done.
I wish you full recovery and hope the damage to your eye can be treated.
Hi Chapter, reads like you've had a busy time. I've had a flare & Shingles as last Oct I had a busy period socialising after successful Chemo. In June, I started taking Mycophenalate (immunosuppressant) to prolong effects of Chemo & that took mths to get into my system. Apparently, flares & Shingles are quite common at start of meds cycle. I was run down (start of flare) thought I had an itchy rash then the Shingles appeared on my back. I had it for 1 mth because my immune system was so weak then I developed Anaemia which I've had for 9mths. The latter has improved over last 2 mths, my energy has returned but I'm still taking Ferrous Fumerate (iron tabs). I pray Shingles leaves you rapidly as it's frustrating when the blisters burst, the liquid inside is contagious, messy & poisonous. For the rash stage, I used Aloe Vera (to soothe), for blisters (Camolile lotion- also used for chicken pox. It helps control liquid leaking fr blisters by drying it out & soothes) & Vitamin E to heal the scars left by Shingles. Rest up! Be kind to yourself! x
Great post, chapter👏👏👏...welcome back👋👋👋 Sorry you're dealing with this bad stuff right now, though...but that wedding sounds great! Will follow this thread with interest☺️
I had shingles in 2009 on the left side of my face going into my ear. Worst. Pain. EVER!!!!! I actually was hospitalized because I was in so much pain and infection was starting to set in. I was unable to eat or drink because the sores were also in my mouth. Seriously I looked like the elephant man. I kid you not, it was ugly. I remember my husband cried when he saw how bad it got at one point. I know leading up to the shingles I had been very tired and stressed. I didn't feel 100%. I know my labs in the hospital said my SED rate was 86 which stuck out to me because I usually was high but never that high. In researching shingles it says that people who are on immunosuppressants or very stressed are at risk for shingles. I also have read that fatigue is a symptom of shingles. Not sure if it appears before or during the shingles. 6 years later I have post herpetic neurlagia and take gabapentin to help with the pain.
Hiya, I too worked away for 3 years and relocated back to my childhood family home after my father passed away. It was my first major flare and quite frankly didn't really understand what was wrong with me. I only managed to pack few of my own things whilst my partner did everything down to carrying me into the car! Eventually I was put on prednisolone and hydroxychloroquine which brought me back human again. However, 2 months later I got Shingles, left side of my body. It was aggressive and very painful. It is said that people taking immunosuppressive medications are at increased risk of developing shingles. I believe that is what's happened to me.
Hope your eye makes full recovery and you feel better very soon.
This morning my face is not bigger than it was when I went to bed, that is an improvement. Shingles I think are under control for now with the anti-viral med, still there but haven't got any worse in last 24 hours, which is good. My face is still swollen around eyes, nose and my check bones are pretty puffy, but I think it is settling a bit. I am dropping from 20 to 15 prednisone today and hope I don't regret it. Skin is the worst, red - burning - peeling - and rough to touch. My eye is recovering, doc said could take a month to get back to normal but is healing, so I am happy with that.
So, I guess the shingles flare up was already in process last week from stress or unknown contact with someone infected. I hadn't recognized it was shingles but my body did and then pushing myself a bit too hard for wedding was to much and brought on lupus flare. I am happy that my face was normal for wedding day at least.
Chapter sorry to be the bearer of bad news but you still need to rest as you are also infectious if you get into contact with pregnant women at work you could cause serious damage to their unborn child. Please check with your doctor to see if you are in a fit state to return to work...you do not want a relapse...
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