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Hi everyone,

I've been around here since last Autumn as had suspicion I may have had lupus. After a bit of argy with consultants and being dismissed I persevered and my bloods came back with all the markers a few weeks ago. Since then my feet haven't touched the floor as the hospital got me in quick sharp to examine, diagnose and give me a treatment and was then back in this morning to go through treatment etc with the nurse practioner at the hospital. I start 400mg of Plaquenil (although I'm postponing it til tomorrow).

I haven't had much time to think or get my head round it since then, and have had a sinking realisation that I don't know too much about this.

My work who have been aware I have been poorly have now told me they need to risk assess me and are going to do this in a couple of weeks. Any tips or advice on how to deal with this. I run a helpline for carers so my work is either office bound or out and about at meetings or networking. It is more than a full time job.

Hubby is also not doing too well with this - he's known I've been knackered and in pain a lot but I've made a rod for my own back not telling him half what's going on - he gets stressed and upset easily and I could do with not handling that at the mo.

Last night, he said he didn't want to come up to the hospital with me as didn't need to ask any questions - yet he hasn't read any of the literature they've given me and thinks I'll just get tired every now and then. I don't want to bang on about how I feel as I feel especially since diagnosis it's ruling my life, but at the same time he likes to spend every moment from 5pm Friday right through to Monday morning doing stuff. We drive a 52 mile round trip every Friday night to go to our "local" - he drives there, I drive home. It's exhausting.

I'm off today as I'm so tired from all the info, the hospital visit this morning and the heat but I can't afford the time away as we've just launched a new service and I need to be on top of it to get it going and our current services need so much looking after.

I really don't think I can cope with this and cope with hubby and my work. Any ideas?
 

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Goodness just reading your post is exhausting... your husband will surely want you to be well and that may well mean scaling down your schedule, both socially and probably professionally. Your body can never give you the best of itself if it is not given the time and space to recover from your exertions. The plaquenil can take up to a year to 'kick in' so the sooner you start that, the better, good idea to get a vision check prior to starting as there is a very small risk to that, but I emphasise small. The best way to deal with this is to be informed, it is your body and you need to know as much about auto immune disease as possible so that you are a good judge of what is going on and what your body will cope with..or not. Your husbands support is helpful though men do tend to bury their heads in the sand..(not all of them, mine was supportive). It is far more worrying not to know what is going on and to not understand any of it...knowledge is power!! This is a serious matter and he needs to give you the kind support you may need at times... try and involve him if you can, my husbands perspective at the Consultations is greatly appreciated both by the Consultant, myself and my husband as he feels able to ask things from his perspective..trying to protect me from myself sometimes!!... He sees things I wouldn't mention and is a valuable resource... if not, maybe a friend who knows you well and sees that you are in pain etc.... keep a daily diary and any photos of rashes etc to take to your consultation with the Rheumy, thats very helpful to them. Many Lupus patients are busy, organised 'copers' and find it very frustrating when it is all too much, but for me it has been a real wake up call and in alot of ways I have changed my life around a bit and stopped being everything to everybody.... just toooo much and to exhausting, I can breathe again by being more still and calm..... take one step at a time, be sure that you deserve the best care..especially from yourself and your husband and take care of that health of yours..... lots of hugs XX
Claire
 

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Hello! I too am fairly recently diagnosed and yes it takes some getting used to the daignisis but it does help knowing and finding out about things you wernt sure of before. People on here have been so helpful and supportive and someone always has tips or advice. i found the plaquenil made a huge difference but it took over six months to really kick in with me. I used to do four jobs so like you was super busy and just tried to cope but the best advice i can give you is listen to your body and dont do too much. Have had to give some things up but this means i dont knock myself out for weeks on end by trying tooo hard. I think we all need to cut ourselves some slack. Not been diagnosed long enough to have many tips to share but sendin a hug instead. take care.
 

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Good luck with the Plaquenil. You might want to start out on 200 mgs. first. Once you see it has no adverse side effects for you then bump it up to the 400. It does take time to kick in as Claire said. Each person's timetable is different though.

Don't push your husband into reading the material, just leave it available. My husband is very supportive but he doesn't want to know all the things that can happen. He says he can see how it affects me on a daily basis and that is enough. On occasion he will ask about a new symptom, medication or doctor's visit and we leave it at that. The idea of not having a cure is very frustrating for him so I try to shield him from as much as I can. Instead I use the site and my one daughter as my sounding boards.

You do need to tackle him about the weekends though. There is no way you can keep up this pace if you want to see some improvement in your health. When I was working I needed the weekend off just to be able to drag myself back in on Monday mornings.

The only thing you can do about work is to be honest. Some days will be better than others. Is it possible to do some of the work at home on your own time table? I hope your risk assessment goes well.

Take care,
Lazylegs
 

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Hi,

Good luck starting your plaq. It does take quite a few months to take a hold.

Just give your husband sometime to learn to deal with your new diagnoses. It affects our families too. Husbands want to take care of us and hate to see us in so much pain. Which he can not help make it go away.

You might have to put your foot down and tell him that you cant be on the go all weekend.

Love,
Lyn
 

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Hi Maz, ditto all the advice already given, Your job sound like mine! Ive been off work now since February, but thanks to the Plaquenil Im so much better. :) Like you my job, at the time of my diagnosis was at its height in that I wa having to deal with major new evens / projects (and only I could manage them). However for the first time ever I stopped, went off sick and concentrated on me for once in my life. I was lucky in that my employers were empathetic and did not make me feel bad about 'dropping them in it'. Im planning on going back in August. :eek:

So my advice to you is this:- get yourself well first, concentrate on YOU and have faith in the medication; this way you will be able yo get back to work and you'll manage so much better. Ive only been on Plaquenil 6 weeks but for me its definately begining to work (Im very lucky I know) so take heart that the medication helps a lot. :) Your hubby just might need a bit of gentle handling, he may be afraid (as we often are when we dont understand whats happening).; you'll know best how to deal with him but perhaps letting him look at this site may help?1!!

Im new to all of this too so I hope Ive helped and not hindered! :sad:
Take care K
 

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Discussion Starter · #7 ·
Thanks everyone, your tips are really useful. I'm not sure yet how I'm going to downsize work but as I'm thinking of moving house soon to where we go every Friday night to our local I'm considering asking to work from home. This is likely to be more possible since appointing a part time deputy. The hope is for three days a week when she is in I work from home and the other two days i come into the office.

Unfortunately the work never seems to stop as I sit here and shortlist for a new member of staff! :eek:

Hubby did come with to the hospital in the end and I think I will let him take things at his own pace. He did seem to get the message yesterday when I had a really bad day (he wasn't too great himself!) and we did spend most of the day lazing around which makes a change!

Take care

Maz
 

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Hello Maz, it already sounds as if you have made some huge changes, or at least thought about ways round things.. that is fab, your body will hopefully feel more like your own soon! Your husband did well going with you, I am sure he will be brilliant, just needs to adjust in his own time I guess. Glad you had a lazy day yesterday, probably did you both the world of good... take care of yourselves,
Claire X
 
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