Are there any teachers (or trainee teachers) with Lupus out there?

Hi there,

I was diagnosed with Lupus last september after having symptoms but no show on bloods for about 4 yrs, then suddenly something showed . I'm currently just about coping with a degree in english which i finish next yr. I really really want to become a Primary School teacher, that is what my heart is set on. But I'm a little worried about how I will cope with starting my PGCE (teacher training) in sept 2013. I just wondered if there were any teachers out there who do cope and who can enjoy it and have any tips on how to cope physically as well as emotionally! I know all about pacing...although I'm not always good at it! (I had ME when I was a teenager) The lupus affects my joints and skin and glands at the moment as I'm in a bit of a flare...I'm on Methotrexate and plaquenil and the MTX is really helping the joints but it's the fatigue which is the hardest thing at the moment.

:)

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  • Hi heidieidi,

    I work in a Primary School as an HLTA/cover supervisor and I have ben diagnosed with mild SLE.However I do suffer terrible fatigue and pains in my legs and feet.My headaches have improved after being prescribed Plaquenil and I don't live onAnadin Extra's so much these days.

    I will not pretend It's easy it's an uphill struggle for me.

    I love my job and am a bit of a workaholic if I am truthful!I am afraid some days I have to come home and go straight to bed anf often spend most of Saturday in bed recovering from the week.If I rest all weekend I reachrge my batteries and can cope.Saying that it's very frustrating as I have no energy for going out enjoying myself!

    Work ,Work Work Not even housework gets done sometimes.

    I am 52 so assuming you are a lot yopunger than me.

    The fatigue hasn't improved too much on the tablets, but the pain is better.

    Good luck with your studies and go for it otherwise you will regret it!

    Beat of Luck

    Loopyloo

    Karen

  • Hi there

    There are two sides to this, and only you can make the decision.

    On the one hand you have to live your life, because despite the misfortune of having lupus you could still get run over by a bus tomorrow, and also if you cannot be yourself and fulfil your dreams you will be unhappy and what is the point of a life like that. We all make decisions that we know have a cost to them, and we pay the cost happily.

    On the other hand teaching is one of those careers that exhausts even healthy people. If you want to go into the primary sector you will have to teach every subject including PE lessons (which usually means some level of participation by you). You also get no time out during the day at all, and in most schools you are also expected to prepare assemblies and school plays and all sorts of other stuff, as well as do the usual parents evenings and so on. In your first year (which is usually the worst year) you will have to spend every evening preparing every class, and probably weekends marking work. Once you have done that, you will find things a bit easier. But I would be very worried if you went into a profession with the idea of 'winging it' - these are children who depend on you for their education! They might be small and they might know less than you, but it is a huge trust that is placed on you by parents and by the rest of the school. You could be responsible for your class of kids being disadvantaged by your presence. It is completely full-on for the whole day - a bit like being on stage day after day if you think about the levels of energy required to engage and enthuse a classroom, not to mention the constant multi-tasking.

    So I would say that if you do go in to a teaching career, do it with your eyes open. The best (probably only) way to survive a demanding job is to get as much sleep as possible. Tell your friends you won't be able to see them apart from in school holidays. If you don't have someone to cook for you, plan it in advance and don't rely on junk food because that will make your health worse.

    Since you want it so much, and I don't know how bad your health is, I would say give it a try, but be prepared to pull out if you find it too much. You need to listen to your body, because it always wins. What would be preferable would be to go in to a school before you commit yourself, so you can test the water a bit.

    I was a secondary school teacher and have had a career break of about 15 years because it made me so ill that I became bed-bound for a while. It really isn't like doing a degree, and it really isn't like most other jobs.

    I wish you lots of luck.

  • I'm 30 and have had lupus for 5 years, I've been a primary teacher for nearly 8 years. It's hard work!! Lots of preparation n marking, being involved n enthusiastic for 6 hrs a day, working parties, report cards, parents nights, ANC the thought of having a life!!!

    But in saying all that I love my job!! (most of the time) I can be off for 2/3 wks due to a flare n it takes another 2 to get ur class back in order n workin the way you want it to. Some days I need to sit continually as I'm fatigued n chn come to me- I explain that I'm not well n it makes me tired n grumpy do they have to help me out! (I teach 7yr olds just now!) others I can prance about being a giant in my drama lesson- u need to listen to your body.

    In Scotland we get 2.5 hrs no contact time for preparation n my ht is v understanding n has given me a 2-3 slot to let me go home n sleep if needed n a 9-10.30 slot so I can have a long lie to help me if needed. I do take advantage of if but she knows it's cause I'm feelin. V fatigued.

    Only you can decide but it's definitely hard going, full on work- I need the holidays to recover but I do push myself- I have a life outside work too, all about striking the work- life- lupus balance!!!

    Good luck xxx

  • You are so brave to be considering this but it is possible. I was diagnosed in July last year, symptoms started in May (joints and skin, now possible kidneys). By the end of term I could barely walk and was very swollen. My class were very understanding and my colleagues have been supportive but I was lucky to already be in a job as I'm not sure how a future employer would react to my application. I haven't had any time out except for bloods etc and have been so lucky that my treatment has been so effective.

    Brain fog is not easy and I have been known to rest my eyes during a free period. I can be in work from 6.30am to 9 pm at times but I keep report writing times free from socialising and relish the holidays.

    After teaching for 16 years, the planning, marking etc do get easier but it would be so dull for all concerned to wing it too often, it can look like that is what is happening but generally experience is the key and most teachers care too much about their class to sell them short.

    It is not an easy job by any stretch but has so many benefits.

    Good luck x

  • Heidi! Your post was scarily familiar!

    I'm doing a combined Physics and Eng Lang atm. In the same boat as you - want to be a Primary teacher, and wondering if it can work! I got diagnosed with ME/CFS as a teen too! Scary eh!

    If it's any consolation I have three kids (nearly a class full if you count the one with autism as 20 kids :P ) and I kind of manage to look after them lol.. their primary school is a really nice place - they're disability friendly - my son's teacher is disabled and manages well.... but yeah I know the fear of the fatigue is a big one. I'm worried about that a lot too.

    All we can do is try our best and see what happens xxxxx

  • This is difficult to answer as Lupus, while having commonalities effects us differently. It's hard but you have to be aware of your body, and like the above posts mention, be prepared to give teaching your all.

    I began my ITT ( secondary art & design) in sept 2008. Our first lecture warned us it would be difficult if there where other demands of our time. I'm afraid I was a bit cocky, after all I have managed tough circumstances before!

    My Mum was ill, as it turned out she was dying and I had already taken ownership in regard to her care, as my only sister lives abroad. I got sick ( along with everyone else at Christmas), I had 7 bouts of bronchitis before pneumonia in April 09.

    I had time out and waited for a placement to complete my teaching practice hours. I completed my training in and graduated with great grades in July 10. I still had Mums care to manage and 1/2 heartedly looked for posts, as I knew my Mum wouldn't be around much longer. Just after her death I was violently mugged, the injured bits didn't heal and I got my dx in Oct 11. I believe two lots of 'trauma' brought things to the fore.

    My SLE isn't yet managed, currently I am aiming to be well enough to apply and hopefully gain work in a school as an p/t art technician. This way I can check out if I can manage, the risk of infection, the pace, etc. without taking on the responsibility being a teacher brings. It wouldn't be good for anyone including me if I let others down.

    I don't want this to seem discouraging, as it is only my experience, and the thing is, if I had known I had SLE I think I would have trained just the same. As it was a long held ambition, and it is that, I may get my Lupus to a place where I can teach. I hope so!

    Best wishes and good luck.

  • Hi Sebitha - Wow! You seem to be a supreme optimist - even despite all that life has challenged you with over the past years..... Like you, my Mum died at a crucial time in my studies to be a teacher (that was in the late 90s). Also like you - I had personal injuries to deal with (not necessary to describe the sorry saga) and upper vertebra were damaged - for which I take strong painkillers daily.

    During the TP year - after graduating, and PGCE - I didn't know that I had SLE. My marriage was falling apart, and so I put the extreme fatigue down to the stress and demands of being new to teaching in a large secondary school. Thankfully, colleagues and HT were very supportive, and for the most part, I really enjoyed most of that year.

    Then I went to teach in an inner City FE college - and things went completely wrong. It was a bad time in education, with morale very low, and funding for resource materials in chaos....students were there under duress and it was hard to even teach a fraction of the work prepared. I became very depressed (another symptom of SLE but again I did not know then) and had to take time "out".

    Later - I returned, but this time as a TA in a primary school. I loved it - until I caught a flu virus (small children are great "carriers") and my immune system just could not cope, and was so ill - had to give up.

    Working in a Pharmacy gave greater flexibility - as it was possible to rest when necessary, and to a certain degree, tailor the hours to suit the times when the SLE is not such a struggle..for me, that's afternoons.

    It IS a difficult condition to manage - I find that I cannot commit to do anything on a set date or time. All I can offer by way of contribution to the excellent comments above, is to make the very most of the "good" days....try to reach an understanding with both your GP and Rheum Consultant to try combinations of medication until you find what suits you best (it takes a month or so to be able to tell). The more that employers are aware of Lupus (as they now are about ME) then the better it will be for all of us......

    I'm sure you will be a GREAT teacher, as you never give up.....

    Looby

  • I work in a nursery if that helps? I was acting and dancing but decided that was not a wise move for my joints, so I am now doing an apprenticeship as a nursery nurse. The days are long but I'm really enjoying it and just make sure I eat really healthily (I dont eat anything with additives/preservatives etc) and have early nights and don't socialise in the week. (have the odd evening swim to help joints though) I use my weekends to socialise and Sundays I rest. I am managing well. I am not the sort of person who can sit around doing nothing, no matter how much I sometimes want to. I'm going to work my way up in the nursery and then I can always move to

    Something more office based if I need to in the future. My advice is GO FOR IT. Most of the time you can make things work for you. Also there's no point sacrificing what you want for something that MIGHT happen. Live for today and cross any bridges if and when you come to them. Good luck! X

  • Thanks Looby, I may be over optimistic. But it feels good to have something to aim towards.

    Heidieidi, I hope all the above replies help you. Only you can decide if you will spend time in the future wondering what if...xx

  • Hi I am like paperbagprincess diagnosed with unspecified connective tissue disease I have two family members with lupus so until it is seen in my blood not called lupus. I am a tutor/trainer in community education. I do get tired but try to keep my teaching to two/three days I find the holidays help to refuel I do deal with quite needy groups and do get tired on the days I teach. I find eating protein and fruit helps at lunch time and making sure I get some down time between courses and lessons

  • Okay, so I have Lupus and I have been teaching for 7 years. I have been told by my doctors at the Mayo Clinic that working with children puts people with autoimmune diseases at risk because of an over exposure to viruses, like epstein barr, which can trigger flares. Also, of course, teaching is very high stress and tiring. It isn't a job that allows you to be off whenever you would like, or to take breaks and walk around, rest, eat, or whatever you need to do. I work in the United States, but all of my family lives in England. I know that teachers here have to put up with a lot that UK teachers don't, but it is still tough. I am now coming to terms with the fact that I have been advised not to comtinue to do what I love and have been very successful with. I believe that I have a talent for taching, but I can't keep it up at the expense of my health. This has been very hard to come to terms with.

  • I forgot to mention- I teach in a middle school, 12-15 year olds, reading intervention (students reading below grade level) many with learning imparements. We work 8 hour days here, sometimes 250 minutes straight with only a 3 minute break every 50 minutes, but we have to spend that standing in the hallway supervising students. The other 100 minutes a day are spent in meetings and grading, calling parents, etc. I have about 20-25 kids in a class, 5 classes a day, for a total of approx. 110 kids every day M-F. I don't know exactly how it is in the UK, but that is how things are here. So when I say lack of breaks or over exposure to viruses or excess stress, that's why! :)

  • Hi Heidieidi, I am a Canadian teacher (Ontario). I have had Lupus since I was 19 (glomerulonephritis). I have had a blood clot in the lung at 22, a terrible child birth at 23, dropped out of university at 22 b/c I was convinced the Lupus was going to kill me by the time I was 30. I had chemo after having my daughter, finished university and teachers college and got my first teaching job at 30.

    I just finished my 8th year and I am convinced that this job will be the death of me if I have to do it for 22 more years!!!

    I am not going to give you any advice because we are all different and, funnily, I think I have never given any credence to my illness... but now hindsight is perhaps 20/20. I am on a medical leave right now; my first one in 8 years.

    Btw, i teach grade 7 and 8. I have found that I am just beat with all the stress of the job. Preparing, teaching, yard duty, behaviour challenges, parent challenges, admistrative challenges, coaching, running student council, hoops for heart, assemblies, report cards, marking... it's all too much. I have cut down the extra curriculars to stay more sane. I have a family as well and I was putting them second because all I could do was sleep and work.

    When I get home from work I sleep for 2 hours. On the weekend, I sleep a lot and relax a lot. I have let my house go a lot. I feel like a crappy parent (except now that I'm off i don't). Yes, so, I am convinced that this job will kill me and it will be all I can do to finish out 10 full years (that's my goal).

    I am desperate to get out of the classroom because of the tired levels. I am now in counselling to learn to cope better with stressful issues. I will continue counselling when I'm back in september. My counsellor wonders why I never talk about my lupus. I just don't know what's normal and what is lupus. That is what I'm trying to find out now... 20 years later!

    so, I am struggling for sure. I aspire to go half time sometime. I want to have more energy to work out after work AND be able to have a 2 hour nap on top of my 7-8 hours of sleep at night.

    I just got out of a very unhealthy marriage where my ex would not respect that I have an illness. He thinks that everyone is tired and sore and that I am just a whiner.

    so, I am a single parent and homeowner now, so my wages are very important... I may have to move or find some way to supplement my income if I quit or go part time.

    If I could do anything different, I would have married smarter!!!!, I would have not done extra curriculars at all (too much), I would have stayed at the junior level (not as much evil behaviours as intermediates), I would have respected myself and not been so guilty about having naps, and I would have allowed myself to let my house go (laundry and dishes... they'll eventually get done), I would have married someone who would help around the house and with our child (hence, someone who respects this illness).

    ... but I still would have become a teacher because that was my lifelong goal. I just realize now that my body can't sustain it. I am definitely hopeful that my next endeavour can help me sustain my income!!! (btw; it is a teacher resource for new teachers and is specifically for new teachers!!)

    Good luck heidi!!!

  • Hi

    I'm a teacher, working in a special school with children aged 3-5, it is the most rewrding job, very exhausting but worth it. I have aching joints, hips, feet, neck, also have Factor V leiden so have had blood clots too, on medication for the blood clotting condiition, you go for your goal, Im sure you ll be great, don't give up on your dream, the chldren will keep you going!!!!!

  • Hi,

    I am in my second year of teaching in an upper school and found that during my PGCE and NQT year I was extremely fatigued and felt very unwell. I was signed off for two weeks with exhaustion. Last week I was diagnosed with SLE and it has given me a sense of relief.

    Since I returned to work in September following the summer holidays I have found that I have been able to cope with fatigue much better and my only advice would be to learn when enough is enough. As a teacher your work is never done so you just have to prioritise and learn when to drawer the line for the day. Make sure from the offset that you plan your time wisely and get plenty of rest. You will undoubtedly at times feel like you are living purely just to work as your weekends will be spent sleeping but it means the holidays will be much more enjoyable.

    If you can accept that you will be a teacher that gets much more fatigued than the "normal" teacher then it will put you in a positive mind set. Be honest and open with colleagues and get them to understand that you have tired days.

    Hope this helps and good luck.

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