Recovery : It’s about a month ago now since I had... - LUPUS UK

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Recovery

LouLamb profile image
34 Replies

It’s about a month ago now since I had the experience of A&E. I ended up signed off work for 3 weeks of top of the visit.

I returned back to work last week and did Thursday and Friday as reduced hours. I’ve had half term this week. I go back to work full time tomorrow at the school. I’m hoping I can cope with this as it is a physically challenging job.

I think my main point is I can’t believe how long it had taken me to get back to semi normal. In my head I thought I would be fine after a week and it would all be over. It took me 4 weeks in total. It’s showed me that slowing down and taking the time is necessary now. I’m use to just carrying on, which I now know makes things worse in the long run.

I’m still doing my sociology course but have fallen behind with it. I emailed and they’ve agreed to give me a month extension for free which I thought was amazing. I’ve also had a lot of support from great co workers.

I’m glad to be getting back on track now though.

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LouLamb profile image
LouLamb
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34 Replies
MEW53 profile image
MEW53

LouLamb,

Hope you’re feeling better soon, sounds like you’ve been through the wars.

Take care

LouLamb profile image
LouLamb in reply to MEW53

I’m feeling a lot better thanks. I had to heal mentally as well because I hadn’t realised how long it would take me to get over everything that happened.

weathervane profile image
weathervane

I hope you get back to full strength soon , conserve your energy until then , maybe extra vitamins might give you a boost xx💐💐

LouLamb profile image
LouLamb in reply to weathervane

I had blood tests few weeks ago and my vit d and folic acid is low

weathervane profile image
weathervane in reply to LouLamb

My son , who has lupus as well , just found out his vit d is really low and has started on a high dose of vit d . Im hoping once his levels have improved that he might have more energy. Is low vit d common with autoimmune disease I wonder, mine is also low .

PMRpro profile image
PMRpro in reply to weathervane

Very common - almost a signature. But it isn't known whether it is cause or effect.

Type 1 diabetes is autoimmune and a study in Finland found that supplementing neonates reduced the incidence of Type 1 diabetes diagnosed in their teens - very common there. Which suggests there may be a causative role.

weathervane profile image
weathervane in reply to PMRpro

Interesting, i live in Ireland ,low vit d is very common here , lack of sunshine 🙄

PMRpro profile image
PMRpro in reply to weathervane

Why is Ireland so green?????? ;)

weathervane profile image
weathervane in reply to PMRpro

RAIN 🌧 ☔️ ☔️

PMRpro profile image
PMRpro in reply to weathervane

Which rather precludes sun!! People here in Italy never believe me when I tell them the amount of rain and greenness!!!

weathervane profile image
weathervane in reply to PMRpro

I have been in the lakes in Italy and it was beautiful - and green 😀. Vit d in my experience has been easy to take , but after a number of weeks i had to have my bloods checked , for the life of me I can’t remember why !!

PMRpro profile image
PMRpro in reply to weathervane

Been a tad damp in Italy this winter!!! Summer does seem to finally have arrived this week though - 28C already up in the mountains at 850m!!

PMRpro profile image
PMRpro

Good to hear Lou - and yes, even at your age, things take time!!!!!

Georgie-girl profile image
Georgie-girl

I totally agree about the vit D thing and its importance. I have small airway disease and my respiratory consultant put me on high dose vit D for a while as apparantly it improves a lot of breathing issues. I didnt buy it at first but I must admit it has removed my need for the steroid inhaler. Hope you feel better soon Lou X

Roarah profile image
Roarah

good luck this week.

Jhpc profile image
Jhpc

Wishing you all the best today, hard to go back full time when your still not 100%, take each day at a time.

Many people are on Vit D I am too, I think it does help.

Take care xx

Saramac63 profile image
Saramac63 in reply to Jhpc

I don't promote the use of sunbeds however, it is an excellent source of vitamin D and always gives me an energy boost in addition to helping my pain.

Lisalou19 profile image
Lisalou19

Wishing you well soon. Pace yourself and rest when you need too xx

honeybug profile image
honeybug

xxx😊🙏🤗💗😘😇🕊

Lupiknits profile image
Lupiknits

I’m wishing you well, too. Take it as easy as you can, in the circumstances x

Clara4 profile image
Clara4

Hi i am a teacher too and am in my mid 50s. I've worked full time throughout and rarely have taken time off. My previous job was crazy through the roof stressful and in the end I cracked and quit reducing my responsibility and money by loads. I haven't been well since 2 and a half years ago and finally misdiagnosed lupus \ sjorgrens in march. Now I have been off 7 weeks having worked through yet another virus because my thyroid has gone hyper. For the first time ever i am taking the rest and it has shocked me how long it is taking. Teacher to teacher.... They will survive without you but you will run yourself into the ground. It is easy to stagger through to each weekend only to rest both days and then stagger through to each holiday to do the same. Each time you weaken yourself making it even harder to recover. I believe my immune system took such a bashing over years it led to this but others would debate that. I am lucky to be in reach of retirement but our employers must look after you... Duty of care. Also Occupational health if needed. Good luck

LouLamb profile image
LouLamb in reply to Clara4

I’ve come home at 12 today from work. I got an awful pain each step I was taking I’m in pain that I want to cry. So I’m going in tomorrow and will talk about maybe some more reduce hours .

Saramac63 profile image
Saramac63 in reply to LouLamb

I am so sorry to hear of your pain and can sympathise with you although it is not lupus that I suffer from. It must be terrible to have to work with your condition. 😔

LouLamb profile image
LouLamb in reply to Saramac63

I’ve taken a naproxen and the pain has calmed down. I think I need to keep on top of regular pain killers now . The only problem is I can only take tablets in yoghurt because it makes me feel sick 😑

Saramac63 profile image
Saramac63 in reply to LouLamb

Do you have a problem swallowing any tablets? The reason for my question is that many tablets for the relief of pain can be given in liquid form if a patient has a problem swallowing tablets like my younger daughter.

LouLamb profile image
LouLamb in reply to Saramac63

My problem is that if I swallow tablets with liquid like glass of Water it makes me feel sick and then I most times would be sick. So I have to use a yoghurt.

Saramac63 profile image
Saramac63 in reply to LouLamb

Well if it works for you that's great so stick with it. I do hope your pain has eased. I was in a right state earlier and in agony until my medication arrived, a swig of oramorph and I am now comfortable and pain free for a few hours at least. What do you suffer from? I am assuming lupus but don't know much about it??

LouLamb profile image
LouLamb in reply to Saramac63

The pain is getting better. I’m going to jump on the shower soon. I find hot water helps a bit.

I have lupus and rheumatoid arthritis.

Saramac63 profile image
Saramac63 in reply to LouLamb

Oh awful but glad you feel better. Going to have to Google lupus as I am clueless about it. 😊

Jhpc profile image
Jhpc in reply to LouLamb

Hi Lou, I too have both lupus and arthritis, the naproxen does help, I try not too take it too often on top of my other meds, as it spaced me out lol ..

I gave up my job a few years ago before being diagnosed, as I was going through the brain fog stage... very distressing...didn’t know what was happening to me.

I took a few months off between jobs and was lucky enough to find a job where I work 2 full days a week...

Take care wishing you well xx

LouLamb profile image
LouLamb in reply to Jhpc

I’m not no meds at moment because my consultant is useless.

I don’t like taking my naproxen every day because it gives me and upset tummy sometimes after using for multiple days in a row.

I’m going to talk to one of the heads tomorrow at work and ask to do some reduced hours this week building it up each day .

Jhpc profile image
Jhpc in reply to LouLamb

Good idea, best of luck x

LouLamb profile image
LouLamb in reply to Jhpc

I’m doing till 12 today and the. Rest of week I’ll do 9-1 . Build it up after. The only problem is the money .

Oshgosh profile image
Oshgosh

FRIGHTENED OF A N EWas In A n e twice last week.the first for an afternoon.which was not too bad.

The second was an overnight stay- horrendous.

2 toilets between 24 cubicles,no washing facilities.no oral fluids offered unless asked for- tepid water.to drink.no name band until 10 hours after admission.was frightened about this.

The nursing staff were fantastic,working very hard under extreme pressures.

I am very grateful for all they did ,also to the junior Dr ,who got to the root of my problem .

By a total stroke of luck,her previous post had had been on the ILD unit where I was initially treated.she was able to really help me.

My main worry is that now I am on I’am immunosuppressants ,I don’t think I will feel safe going to a n e n if. I become ill.

There was no air conditioning,no air circulation,the only decent fan was pointed at the managers station!! Lack of washing facilities bothered me,I couldn’t reach the alcohol gel from the bed.

I appreciate that A N E Is busy,with limited space,but I was there for 14 hours. If I hadn’t been able to ask for water through the night,I think I may have become dehydrated- drip etc.

PLEASE I’m not complaining,just commenting.

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