LUPUS UK
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Just so bogged down with it all!!!!

Probably just a moan really!!

I just feel so bogged down with this blinking illness at the moment! I’m really struggling with trying to hold it all together.

I have 2 small kids and I work only 2 days a week but a very stressful 2 days a week! I’ve got to the point where I feel I need to take a couple of weeks off sick ( im hardly ever sick from work I usually drag myself in whatever!) but at the moment I really feel I just can’t keep going like this.

I have so many hospital apps here and there (4 this week already!) and I just feel rubbish everyday. All week I’ve had a terrible headache prob caused by stress at work on Monday. The problem is it’s a really busy time at work with end of yr targets and nobody else can do my job so I feel under pressure to just keep going. Today I went to work and just went into my room and asked for nobody to see me or talk to me because I’d have just broken down and been useless then!

I think I’m just soooo fed up of this illness every single day it’s there in some way! I’m tired of it, exhausted! I just want a break, I’ve told family members I can’t manage but I don’t think people really understand. My 2 yr old is quite hard work too and I find it so hard and it makes me fed up that I can’t manage simple everyday stuff like everyone else

The thing is if I go off sick it won’t just be a day it will be a couple of weeks I think and as there’s nobody to do my work I’d only have to go back to a worse situation! So in the long run I may have to just plod on and man up!

Sorry for the moan but am just sick of it all at the mo but I’m sure it will pass! X

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Moans are valid! That sounds really hard and exhausting. You're a trooper! I'm sorry things are so hard right now and I hope you're able to figure out some relief without making things worse later. Good luck.

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Hi,

Sorry to hear you struggling. We all do moan and it's ok to. Where children are involved, I know it's really hard to cope. As you have acknowledged that it will come to pass thats great! As for myself i realised that i had to focus on what i can do rather than what i cannot do. It is really hard especially if you want support from friends and family and they dont seem to understand the disease. Finacially it is so restrictive as full time work can be really hard and hence we opt for part time.

As you are aware that this illness is so unpredictable, the best you can do is talk to someone about how to manage the illness without you stressing yourself. Stress is really bad for us Lupies.

What you are doing now is great! If you are managing 2 days at work then that's incredible. My thoughts are with you and know you are not alone. Hope you get the support you need.

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You really must consider your health & your children.....they are for life...a job isn't!n

I find the more you push yourself to accommodate work the worse you get.

Is there any possibility of your little one going to nursery & you working from home? Can you discuss things with the powers that be at work & explain if you don't ease off now you could well have to give up working permanently?

I know that sounds drastic but after nearly 20 years of RD, I know that (for me at least) if I tried to soldier on for too long I get the flare from hell that could take months to recover from.

I can't imagine how anybody with toddlers manages the agony of Lupus/ RD.......before RTX gave me my life back I could hardly look after myself, let alone care for little ones.

You are right people don't understand...until something really drastic happens, so do have serious conversations with family &( this is hard I know) ask for whatever help may give you a break to take a breather.

I really hope you manage to arrange something lets you take a break until you find the right meds to control this rotten disease.

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Hello Sara_A

I'm sorry it has taken me so long to get around to replying.

How are you doing? Did you take any time off work?

I know exactly how you feel. I was diagnosed in 2013 but think that my lupus was set off by the birth of my 3rd child in January 2008.

I did go back to work after having her but without realising it the lupus flared up. I had my 3 children, just within 4 years - 47 months to be precise. I had a job as a Legal Executive in a local law firm, my dream job, using my degree. I worked part time after starting my family, I'd been there 10 years and so proved myself. They were flexible. The office was 10 minutes from home and close to my kids schools. It couldn't have been better. I was being bullied a bit towards the end and this didn't help. But I had this flare and I got very depressed. I felt like my world was falling apart. I couldn't cope with work or the kids. I was locking myself in the toilet for a cry virtually every day I was in work. I was totally exhausted. I had sores on my head and I had started to notice I couldn't sit in the sun without burning really badly. I had headaches. But no diagnosis. I talked to my husband and we decided that I would hand my notice in and concentrate on my family for a bit. Which I did. They needed me.

I took about 18 months/2 years off. Then my daughter went to school part time for a year and then full time and I started volunteering as a teaching assistant and then applied for a job. The pay was rubbish compared to my legal job, but it was school hours and school holidays off, at my kids school, so perfect. Plus a lot less stressful - well most of the time.

But really in hindsight my lupus still wasn't under control. I was diagnosed and started on hydroxy. But it took around 12 months for me to feel that it was really helping. I wasn't given any steroids. I then got a dermy who helped me and added MMF into the mix, in the summer of 2016. But I still got flares and terrible headaches. I still felt it wasn't completely under control.

But 2016 we were facing redundancies in my job. Cut backs due to austerity and TAs are first in the firing line. At first I thought I can re-apply for my job and interview, I want this job. But morale at school was horrendously low and people were crying that they couldn't pay their rent if they lost their job etc. It was awful. I was coming home from work and sleeping for 2 or 3 hours, exhausted and then getting up to cook a meal. My young children were left in the house unsupervised really, whilst I slept. My youngest just sat watching TV after school whilst I slept. And I was so grumpy. I only did 16 hours a week over 3 days but work was getting all of my energy and I had NOTHING left for my young family. And I got one of my headaches/flares. I was juggling doctors appts and physio and hydrotherapy. I was part time in a school that couldn't afford to replace me when I wasn't there and so I tried to make up time off on other days. It was all too much. Again I spoke to my husband and we decided I wasn't coping and I would jump ship. I told them I'd go.

So the short story is lupus has taken 2 careers away from me. I haven't worked since July 2016. It was extremely hard at the time. Who wants to have to give up a job at 41 and wonder if they'll ever be able to work again? Don't get me wrong, I am lucky that I could do that, give up work. My husband is able to support us. But mentally it was tough. I had always been a strong, capable, independent woman. I liked working. I ran and had done 3 half marathons and lots of 10ks. I gave birth with just gas and air. I had endless energy and always had a tidy house. Everything was under control and organised. Well not any more. It's a terrible realisation to deal with.

Now, 18 months on after finishing work, I know that it was the best thing I could have done, for me and my family.

Since leaving work, I have been to a private hospital to get a second opinion on my lupus (April 2017) and I had another drug added into my mix. This combination has made a big difference to me and I am the best I have been for a while. I guess part of that is the drugs but part is the life style management and giving up work. Accepting I am not super woman and must listen to my body. I now sleep during the day if I need to and then am awake when I have collected the kids from school. OK I don't always pace myself right and I might need a nap at weekends, but the kids are seeing more of me and I am a lot less grumpy - I don't shout at them nearly as much as I did. I feel so guilty for how bad it got, looking back.

They are now 14, 12 and 10 years old. They aren't going to be at home with me forever. The oldest might only live at home for another 4 years. It's going to fly by. I am putting a positive spin on it. I am seeing more of them than if I was working. Hopefully when they fly the nest, they will remember that I was here for them and appreciate that.

Don't get me wrong, I still be jealous of my girlfriends who work and earn their own money. Who run and keep fit. Who can do all the things I used to do and never seem to get tired.

But that's not the hand I was dealt. Acceptance is a huge part of this.

I also know that if I am unwell and can't function, my young family suffer. And they deserve better. If I am not well, I cannot look after them And they are my world.

I hope I have made sense. I hope you get what I mean. I know not everyone can afford to just give up work and I know not everyone wants to. But when things seem to be crashing in on you, sometimes you need to at least take a step back and re-evaulate. Maybe you do need a couple of weeks signed off work, to give you a chance.

My best wishes and please take care of yourself.

Wendy x

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Hi and Thanku so much for taking the time to write back to me I really appreciate it. I get what u are talking about totally and think I’m just being too stubborn and have wirked hard to get where I am and don’t want to leave nursing.

I know tho that something is going to have to change. My working hours are chafing soon as at the mo I do a 10 hr day!!!!! Kills me! So soon I will be doing 2 7 hr days and am hoping it will make my job easier too spreading it out better as on a thurs I did 9-2 and literally did what I had to finished my clinic then left for school pick up in a rush so always felt like I’d not finished.

The snow is rubbish I’ve had to use my crutch to walk to end of rd with my 2 yr old on reins to thankfully meet my friend who took my little boy to school for me. I’m in a lot of pain and stiff today and hate walking in this snow as worry if I fall and really hurt myself!

I will take on board ur great advice thanku!

Are u in the uk?? What part?

Sara

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Hello. I’m in Pembrokeshire, South West Wales. We don’t have snow yet. Tomorrow is the day for us. Hate the cold. Wearing thermals and layers, fingerless gloves and hat indoors. Still cold. Stay safe. Wendy x

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