Full time student and Lupus: any tips?: Hi everyone... - LUPUS UK

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Full time student and Lupus: any tips?

Amakura profile image
16 Replies

Hi everyone

I've become a full time mature student and I was wondering if anyone had any tips for studying with lupus? For instance, how do you manage both without your education / grades suffering as a consequence? As in, and what happened to me today, I was completely exhausted and in pain during my lecture and it was a struggle to keep my eyes open. Any tips with finding / implementing a healthy (self care) balance?

By the way, I've read the Lupus UK hand out about this but posting in the hope someone might have some more tips that may not be featured within this fantastic booklet.

Hope the above makes sense as I'm having a bad fatigue day today.

Thanking you in advance

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Amakura
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16 Replies
tree_shadow profile image
tree_shadow

If it motivates you at all. I have Lupus, am working full time and studied part time on top of that a MSc. And recently graduated with a distinction. So it is possible to do it!

baba profile image
baba in reply to tree_shadow

Make sure student support knows of your Lupus. You may be able to get longer to complete assignments etc if you are having a flare or other health problems

Amakura profile image
Amakura in reply to baba

Thank you. Funny enough, I contacted them today. My issue, like everyone else, is stress triggers my Lupus symptoms and unfortunately, the ones that come alive do so immediately and not gradually (so I've found).

Again, thank you for the tip

Amakura profile image
Amakura in reply to tree_shadow

Wow, that's a massive achievement! Well done and congratulations. Any tips?

tree_shadow profile image
tree_shadow in reply to Amakura

Try study the material before the lecture. So the lecture helps you consolidate rather than struggle to understand. If the lecture is helping you piece together ideas already floating around in your mind, it makes it much easier to pay attention and less stressful.

Amakura profile image
Amakura in reply to tree_shadow

Funny enough, I tried this during my first week - this week - and it helped immensely.

Thank you ☺️

TGee profile image
TGee

Pace yourself, schedule study for time of the day you have more energy and don't feel the need to be always physically present.

For me, I did a lot of self-study so never bothered going to lectures where they just read material if I was feeling tired. Nap as soon as I got in and study at night, I am a night person. Avoided unnecessary excursions around campus especially in heat.

You can do this. Just need to find what works for you.

Amakura profile image
Amakura in reply to TGee

Thank you so, so much. I'll experiment over the next two weeks. All the lectures are online due to the covid, so difficult to avoid but I'll ask if they can make exceptions during my fatigue episodes.

😊

Hayleyrose28 profile image
Hayleyrose28

Hi

I was completing my BA when I was being diagnosed with SLE and completed my MA after diagnosis - I won’t lie and say it’s easy, as I’m sure you know yourself, it’s far from it.

Firstly, I would make sure that your personal tutor is aware of what you’re going through - in my experience they are helpful in guiding you, and managing expectations from lecturers too. Also, it’s important to be in touch with the disability support team at your university. Mine helped with adjusting assessments and exams, and working a way around lectures when I wasn’t feeling well enough to attend. My course didn’t mark our attendance, but I know others do, so they should be able to make allowances given your circumstances.

Unfortunately, I had a massive flare when it got to my end of semester assignments, which led to extensive tests to diagnose other conditions while I was completing my dissertation for my MA - as I had already established myself with the disability support team at the university, everyone was aware of my circumstances and made allowances accordingly. (In my case, I had extensions on my deadlines, but adjustments are made in a case-by-case basis).

As lectures are all probably online, maybe these could be recorded for you? We used to have a system at my old university called panopto which would record the lecture slides and the audio. If this is not common practice - maybe the lecturer may record it in another way for you, given your extenuating circumstances (as they would know that it’s not a case of you “not bothering” these are real and valid reasons).

Most importantly, try and be kind to yourself. I’ve learnt - to my own detriment - if I attempt to push through a flare / don’t rest on a day where I’m feeling particularly awful, then I can make myself feel worse for more days than I would’ve if I had allowed myself to rest in the first place.

Sorry for the essay, hope this helps in some way! Wish you all the best with your studies, believe in yourself and I’m sure you’ll do brilliantly x

Amakura profile image
Amakura in reply to Hayleyrose28

This is not an essay, it's filled with loads of gems. Thank you!

Funny enough, I studied for my degree in the evening whilst working full time. Half way through, I became very ill but it turns out, 10 years later, that it was Lupus. Unfortunately, it was dismissed as some sort of passing bug of some sort and I never made any attempts to rebut them.

Now, I'm studying for my Master's whilst my specialists are still trying to find the right medication as I've not only for lupus but a plethora of rare autoimmune diseases as well. So, your pearls of wisdom are extremely helpful because I can no longer rely on my study method 10 years ago, and I've also got to be mindful of the fact that when my SLE symptoms get going, so do the other ones. It's like going to a bar with three different deejays playing three different types of music all at the same time.

Unfortunately, despite being online, they don't record lectures but said they would if I have a hospital visit (blood tests) or telephone consultations. However, I will ask if they would do it for when I have my 'party' flares. Also, from what you've said, I will arrange a meeting with the course tutor - just in case, he has any questions about the disorder(s) as well. I'm struggling to understand it, so I'm sure he is as well. I'll also do the same thing for student support as well.

Thank you so, so much 😊

Jacpat profile image
Jacpat

Hi Amakura,

Funny to have come across this post today as I logged in as I am really flagged at the moment. I am currently at work and exhausted and all my muscles are aching, stiff and sore. I have been feeling lately that I have bitten off way more than I can chew (I would need two or three healthy of me to try and do everything I am attempting at the moment). I am working full time (I changed my hours over covid and now work 6-1 straight through without a lunch break), I have a twelve year old daughter and all the afterschool activities back in full swing and I was accepted into a masters programme to qualify as a primary school teacher and started three weeks ago (all while trying to organise finishing the house I have just built). To say I am stressed is a complete understatement. I was off work sick for the first three months of the year and was pretty much in bed for the duration. I had really really burnt myself out and man did I pay the price. With covid I was only back to work for two weeks before we went into lockdown here in Ireland and so I had another few months at home to do pretty much nothing and it was great and I had no stress and the flare really came under control and I was starting to feel a bit like the old me who could take on anything. Fast forward a few months and I can honestly say that most days my body feels like I have been in a car accident and my joints are swollen, my bones are cracking, I always have a temperature, rashes are starting to reappear and I am exhausted. Something has to give and I really don't want it to be the course as I see it as my future and something I always wanted to do with my life. I also feel if I can get through the next few years I will have some balance in my life for once. I need to work to pay the bills (I am a single mum in every sense of the word and so one income to support us) and my daughter can't suffer as a result of me being busy and sick (I already have huge guilt for time in bed trying to rest so that I can keep going). I have tried doing lectures from bed and reading the allocated reading from bed but I am so exhausted I just fall asleep. I am at a complete impasse but it is great to hear that others have done it here and it is achievable and I will try to hold on to that. I hope it all works out for you, I think if you can at all try and keep going (maybe my mentality is wrong but I just keep thinking I won't let this lupus beat me - unfortunately sometimes it doesn't let me win this argument and I have to give in, and that is ok too - but on the whole I just keep trying to push through everyday, tell myself it's ok not to always be ok and pray that the following day will be better. I wish you all the best with your studies!! xx

Amakura profile image
Amakura in reply to Jacpat

Ahhhh, i don't have any children but I have other stressful factors besides my health lingering in the background. I also embarked on a Master's course primarily, after being almost recently, diagnosed with a multitude of autoimmune disorders, to prove to myself that life can go on despite my varied diagnosis and by doing so, I will be able to achieve so much. Reason being, I woke up one day in Dec 2017, a few days before Nye, unable to see properly and in excruciating (eye) pain and everything went down hill from there (other symptoms started to appear, lost my job due to my illnesses and unsupportive boss plus organisation etc) and in Feb 2019, I was finally diagnosed with SLE and other autoimmune disorders. My life had done a complete 180 degrees without (well, I and other medical professionals ignored the earlier signs) prior notice. It was like a high speed train crash.

With the lockdown, despite going backwards and forwards to a&e, it was like a welcoming pause button. So, totally agree with you there.

I primarily struggle with giving into Lupus and that sets off a number of emotions. For example, I woke up crying today as I've got loads of reading and other priorities but I'm so exhausted and stressed that I'm finding it difficult to sleep and when I do sleep, I find it difficult to wake up. It frustrates me. It confuses me and infuriates me. I have this attitude, which I know is wrong, that Lupus is a spoilt child and sometimes should be ignored (hence, the bad habit of pushing through). It's not as though I can write to the Lupus Ombudsman and complain about myself lol. I think, if I could, I would feel so much better. However, you are right: I have to learn that it's okay to not be okay sometimes and be just fine with that. I'm really going to try. Time to do some reprogramming and face the facts.

I take my hat off to you, as a single mother, and achieving so much despite having to manage the symptoms of SLE. Your daughter must be so proud of you. You are indeed a superwoman and your words of encouragement have definitely helped and has given me a reality check. Thank you for taking the time out to share despite your hectic schedule.

😊

Kelda74 profile image
Kelda74

Hi I have been a mature student for the last two years and a single mum. No formal Lupus diagnosis yet but my first Lupus Rheumy appointment is Tuesday. Talk to your tutors and to the student support team they can put loads of help in place to make things easier. My Uni have been brilliant. Something small like a recorded lecture is really useful as you can work around you.Your student support team will put a plan in place for you the tutors listen to their advice. Make a plan yourself add study times and rest times to it , I admit it means juggling them sometimes but if you rest as much as you do anything else you have a better routine. I also worry about my grades but my tutors remind me that I do the best I can with my circumstances. With their help though you can get the grades you want.

I hope this helps but absolutely talk to your tutors and support team. Good luck, what are you studying? x

Amakura profile image
Amakura in reply to Kelda74

Thank you so much Kelda. I have reached out to the support team, who have kindly put a support plan together and emailed it to the relevant course tutors but I will, after reading your post and others, reach out to them individually and discuss my symptoms with regard to my studies. Also, explain to them how 'my' Lupus effects me. I've found, within my everyday life, everyone just assumes that Lupus only consists of skin manifestations and 'feeling a bit tired', so maybe I have to be proactive and provide them with a tad more detail. Obviously, at no fault of their own, as it is very tricky to get your head around it.

Great to read that your tutors are being supportive and keep up the good work.

Thank you :)

Pabla_1234 profile image
Pabla_1234

In my opinion, It's important organize your study, every day, what you can. Study with friends. Notice at school your situation, and ask them for:

-a personalized program,

-an extension of the deadlines,

-to schedule your examination at school.

It's your right. And.. I think we must do more and more to help ourselve to have more rights, to have a better life, because we have a big bag on our shoulder, called lupus.

Amakura profile image
Amakura in reply to Pabla_1234

Thank you and I will most definitely take your advice. :)

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