Hello everyone, I've been diagnosed with SLE about 4 weeks ago. It's been quite a journey to get to this diagnosis.
I'm a nurse and live in the West Norfolk area.
I would like others opinion because I have to admit that I do suffer from press-on-itis and will go to work when perhaps I shouldn't.
Five days ago I experienced a seizure during the early hours of the morning, a first seizure for me. I had already been off work for two days prior due to feeling pretty grim; headache, tired, nauseous, foggy headed, the usual stuff! I was planning on returning to work today (6 days off) but still feel a bit grim. I usually work alone in a side room and sometimes I can go for a few hours between seeing clients and colleagues.
I'm waiting for an appointment with the epilepsy clinic which should be within the next ten days and can't drive for the next three weeks on medical advice. Work is 3.5 miles away and I was planning on cycling in.
What are others thoughts on this? My wife is very protective and feels that I should ask the GP to sign me off until the epilepsy appointment.
Written by
JimCWalker
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I diagnose not "press-on-itis" but temporary insanity.
When you are instructed not to drive following a first seizure, it is because you may not be safe to be in charge of a vehicle. Because, through no fault of your own, you might lose control of that vehicle and hurt yourself and/or cause an accident that hurts other people.
In what way do you think *cycling*, (whilst "still feeling a bit grim") magically eliminates the risk that you might lose control and hurt yourself and/or cause an accident that hurts other people?
Take your time......
Yep. That's right. It doesn't.
Please listen to your eminently sensible wife. You are entitled to take any risk you like with your own life, but not other people's.
If you are determined to go to work, take a bus or get a lift in. Why you'd want to do that, I have no idea, but....
Please look after yourself!
x
PS I just realised I've written just about the least welcoming "welcome to the forum" message anyone has ever written. Sorry, JimCWalker. You're in a horrible situation. I hope you find this place truly welcoming and supportive. It nearly always is!
Jim, I have to concur with Whisperit and your wife, absolutely no way should you even consider cycling into work, trust me, you will not gain any brownie points for turning into work, you are, and I am deeply sorry you are, sick Jim.
SLE is a good enough reason, with the symptoms you are displaying to get your GP to sign you off indefinitely, until you have a treatment plan underway for it, and also, to find out what is causing your seizures, and please bear in mind, SLE could be a reason for these.
I know it probably feels totally overwhelming for you at present, but we have all been where you are processing a diagnosis of SLE, it is totally normal to go through emotions, such as denial, defiance, anger, and sadness.
If I were you, my very next step would be, GP appt, be honest what has happened, how you are feeling now, and get him or her to sign you off, so you can rest, and prepare for the medical merry-go-round.
To close, remember, if you do not have your health, you really do not have anything.
Jim, this is a cruel disease and whatever you try to do during a flare (which this sounds like) will be a mistake. You’ll feel so much worse if you press on. You need to force yourself to relax and try to stop worrying or feeling guilty. Just be kind to yourself. You only have one body: listen to it and respect it. No-one asked for this disease; it’s a nightmare. But it could be a lot worse.
Today I’m feeling awful: sore throat, aching limbs, feverish - and it’s all because I’ve been overdoing it since I got put on steroids to treat a flare and they made me feel so much better that I wanted to enjoy feeling good for once. So I walked my dog, let the hens out, collected the eggs, made packed lunches for people and then cooked dinner etc etc.
Do not give in to the guilt.
Rest. Relax. You must do this to feel better. I know how frustrating it is but we must all learn from each other’s mistakes on here. Learn from mine and have a day resting, please.
To be honest I was considering just calling in for the next couple of weeks until I can drive again, I think I just need that reassurance and confirmation that this would be the right thing to do.
One of my managers mentioned that this 'push on' attitude is a hangover from my forces days. Work have been really good since I received the diagnosis, but as you say guilt is a issue, especially when the department is already understaffed.
Just called the GP and have an appointment for this afternoon. I think I need to learn how to take it as easy as possible!
That's a very good idea. This is a long-term game. I had 3 different part time jobs at the time I was diagnosed and for the first 6 months, tried to juggle all three. The penny only dropped at a leaving do for a colleague, when I realised that I was physically unable to walk from the pub to the railway station to get home - and I had been on water the whole time! If you are sick, you are sick. You need that downtime, even if you are feeling OK-ish sometimes. x
Hi Jim, so sorry you’re going through this 🙁 I’d agree with the others that you must rest and be kind to yourself. I’m ex forces too and unfortunately that ‘push on’ mentally does not work with lupus, in fact quite the reverse but it’s taken me many years to learn that through uncomfortable dangerous experiences and I still haven’t fully learnt it! I was told not to drive during a recent neurolupus flare (quite rightly, my cognitive skills were so poor I didn’t know whether red or green traffic lights meant stop and I was losing consciousness on a regular basis). My friends gave me a similar tough lecture about driving to the one whisperit has given you (he’s not normally that scary!) but somehow I thought it would be ok to cycle?! 🙄 Fortunately managed to fall off pavement side but ended up unconscious. My rheumatologist was not amused and cycling was ‘officially’ banned too.
I find that when the disease is in my brain/ nervous system which yours almost certainly is if you’ve had seizures then I also lose the ability to make sensible decisions so you’ll have to listen to your wife for a while I’m afraid!
I hope you have good medical support and have started on treatment? Life may be different but you will hopefully soon feel much better than you currently do.
If ever I feel a ‘wimp’ because of that deep seated military attitude about physical ability and ‘pushing on’ I focus on the far greater mental strength that is needed every day for us all to cope with this disease. We may not be physically as able but we’re still strong and tough - just in different ways. Well that’s what I tell myself when I lie at the bottom of the stairs because climbing them feels like an expedition up Everest and they’ve defeated me 🙄😂
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