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    About Me:
    Hello!! My name's Bethany and I'm 18 years old (how scary is it that I'm now an adult ahhh! ). I suffer from endometriosis and possibly fibromyalgia (UPDATE: my joint pain is now thought to be hyper mobile euler danlos syndrome, I have an appt soon to hopefully get a diagnosis and it is also believed I have postural orthostatic tachycardia syndrome) so I'm in and out of hospital quite a lot which means I can get quite behind in sixth form and is definitely a big disadvantage for me. I'm also going through a lot of therapy at the moment due to some trauma in my childhood so currently it feels like the world is against me doing well in education!! I have a passion for psychology (as in I absolutely love it!) and I hoping to do a degree in it and work as an educational/clinical psychologist and use my own experiences to help children in similar situations that I found myself in. This means I have a lot of studying ahead of me so luckily I enjoy it. I am a bit of an animal lover, below I'll introduce my pets because although this is about my education I will probably talk about my pets quite a bit!

    My Animals: (aka the things that keep my sane during exam season!)


    Charlie is my 10 year old border collie who is also my emotional support animal. He's super clever and won't leave my side when I'm really ill. He takes me out of panic attacks and flashbacks which I'm so so grateful for! I couldn't imagine myeline without him. He is a very sensitive dog and loves to play fetch!
    [attach]6.985386985426985e+29[/attach]
    Winnie is my newest guinea pig, I got her on 9th October after losing my piggy Izzy. She loves to squeak and popcorn around and spends a lot of time on my lap eating lettuce! She is very hyper and absolutely loves food!

    [attach]6.985386985426985e+29[/attach]
    Lola (on the right) is my oldest guinea pig. Unlike Winnie she will not sit still on my lap. She's very cheeky and loves running under the sofa when I'm not watching her. Her sister (on the left) is Izzy who I lost in September. They were very close however Lola and Winnie seem to be just as close which I'm really glad about!

    Education: I'm in my 2nd year of sixth form studying chemistry, psychology and media studies, due to my poor health last year I'm doing my a levels over 3 years instead of 2. I'm taking 1 AS and 2 A Levels this year. My health definitely has a big impact on my education and often leaves me behind so join my journey and let's see if I can still achieve good grades whilst being chronically ill (that's what Spoonie means btw)

    Exams:
    Psychology Alevel
    Media Studies Alevel
    Chemistry AS Level

    Predicted Grades:
    Spoiler:
    Show



    (These were set before I was diagnosed as chronically ill so idk if my teacher's want to move them down or something)
    Psychology: A
    Media Studies: A
    Chemistry: A




    Grades so far:
    GCSE:
    Spoiler:
    Show







    AS:
    Spoiler:
    Show



    Media Studies: A




    Goals:
    To complete my media coursework to a high standard (last year I got 94% so not sure I can beat that!!!)
    To get my attendance to around 75% (I know that seems bad but for me with everything going on it's actually quite a tough goal).
    To avoid hospital AS MUCH AS POSSIBLE (please body help me out here!!)
    To catch up with last years psychology work
    To achieve at least one A/A* grade
    To get into Bath Uni to study psychology


    I hope you'll join me on my adventure through the good days, the bad days (there are a lot of them) and all the days in between!

    Bethany
    XOXO
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    (Original post by Bethany1309)
    Hi! My name's Bethany. I'm 18 doing two alevels this year and one next year. I suffer from endometriosis and possibly fibromyalgia so I'm in and out of hospital quite a lot which means I get really behind on work so let's see if I can still achieve good grades whilst being chronically ill (that's what Spoonie means btw)

    Exams:
    Psychology Alevel
    Media Studies Alevel
    Chemistry AS Level

    Predicted Grades:
    (These were set before I was diagnosed as chronically ill so idk if my teacher's want to move them down or something)
    Psychology: A
    Media Studies: A
    Chemistry: A

    Grades so far:
    GCSE:
    Additional Science: A*
    Media Studies: A*
    Core Science: A
    Maths: A
    ICT: A
    RS: A
    English Lit: B
    English Lang: B
    Spoiler:
    Show



    (Idk if you've noticed but I did less GCSEs then most people, this is due to the fact that I suffer from serve anxiety/depression along with PTSD and some lovely other things so not only has it stopped me from doing as many GCSEs as I wanted to but also stopped me from completing my a levels over 2 years like everyone else )




    AS:
    Media Studies: A

    Goals:
    To complete my media coursework to a high standard (last year I got 94% so not sure I can beat that!!!)
    To get my attendance to around 75% (I know that seems bad but for me with everything going on it's actually quite a tough goal).
    To avoid hospital AS MUCH AS POSSIBLE (please body help me out here!!)
    To catch up with last years psychology work
    To achieve at least one A/A* grade
    To get into Bath Uni to study psychology


    I hope you'll join me on my adventure through the good days, the bad days (there are a lot of them) and all the day in between

    Bethany
    XOXO
    Good luck this year! Interesting mix of subjects - why did you chose them? Hope you have a good health year this year so you don't get too stressed out about exams and hospital :yep: :heart:
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    (Original post by Fox Corner)
    Good luck this year! Interesting mix of subjects - why did you chose them? Hope you have a good health year this year so you don't get too stressed out about exams and hospital :yep: :heart:
    Thank you! I love love love psychology so that was an obvious choice for me (although at the time I just wanted to do it as an AS and now I want to study it in Uni!). Chemistry is another subject I just love, even though it's so hard! And media is an 'easier' option for me. The creative side just comes quite naturally to me so it was something I chose which allowed me to be creative.
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    This week has been hard. My pain is bad and I've needed to rest up quite a bit but I'm desperate to catch up with work I missed at sixth form last term!! I had a psychology exam last week and struggled more than usual due to the fact I missed most of the content at the end of last year as I was admitted to hospital 4 times! Speaking of hospitals, I saw my doctor today and we think I'm going to have to go back in the next few days as I most likely need Morphine for my pain.

    I've started a pain diary so I can show my doctors how I'm feeling and it can also help me to show my teachers why I'm finding things hard. Maybe some of my pain correlates to stress and I can put things into place with my teachers to help prevent me getting too stressed out. I highly recommend a pain diary to all of my fellow spoonies out there, when you're as ill as me communication with professionals is the only way I can get by, my teachers are so so so lovely and I really appreciate them helping me out :heart:

    Things aren't easy at the moment but I'm determined not to give up. Studying isn't as high of a priority as it used to be and I find that really sad as if my health wasn't like this I would be doing so much better at college. I'm just going to take every day as it comes and hope next term will be better.

    (I'm on a lot of pain relief so I apologise if this isn't making much sense!)

    xoxo
    Bethany
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    Week 1- Mon 23rd Oct-Sun 29th Oct
    Hello! I haven’t actually decided how I want to lay out my posts yet so bear with me the next few weeks whilst I work out what I want to do .

    This week has been a nightmare! I started off on Monday planning all this revision, catch up work, coursework and homework that I needed to do but sadly another trip to the hospital meant that this wasn’t possible . I will admit it has made me feel very stressed now as I was really hoping to FINALLY catch up with the psychology work I missed at the end of last year due to being in and out of hospital (my illness only started really affecting me around May last year so I still haven’t managed to work out how to be chronically ill and keep up with work whilst making sure I keep my mental illnesses at bay –the problem is when my mental health is bad I overwork so I’m going to have to ask my teachers to tell me if they notice that I start doing that). I’ve decided I’m going to speak to my teachers for psychology and see if they have a free period at the same time as me to go over some of the content I haven’t properly learned yet, my teachers are absolutely lovely so hopefully they’ll help me out. Luckily Media Studies is on the old spec so I already have an A grade in 50% of it and another 25% is coursework, which I can do at home whilst only 25% of my finally grade is exam based which I’ll do in May/June time. I’m retaking Chemistry so I don’t have to worry too much about missing stuff last year as I’m going to cover it again this year, my teachers for Chemistry are again really lovely so I’m sure if I get stuck they’ll be able to assist me so I’m trying not to stress myself out too much!

    Personal:
    This week has involved many phone calls to my doctor, a lot of painkillers and a hospital admission where I had to get a catheter put in (which has been removed now, thankfully!). I hate going into hospital so I spent as much as time as possible trying to avoid it and managing my pain at home but unfortunately on Friday it all got too much. The problem with endometriosis is the pain is related to your menstrual cycle so the main treatment for it (which sadly doesn't cure it!) is birth control. The pill made my MH very bad so about a month ago I got taken off of it which means I've started ovulating again, this means around 2 weeks out of 4 I'm in an awful amount of pain and the other 2 I can just about manage, but it's going to take between 6-8 weeks before I see a doctor a get the coil put in which means I have to go through another 2 cycles and will probably end up missing a lot of sixth form work again! I think the whole situation has just made me very anxious now, every cycle the pain gets worse and I'm not sure I can manage it for much longer. My doctor when I was in the hospital wouldn't listen to me either but I'm 18 now, in an adults ward, why is she still talking to my mum instead of me? I'm going to leave feedback anyway as I want to be the one in charge of my treatment. I see my doctor on Wednesday so I'll see what he says about the whole situation.

    Pet Update!:

    Charlie-My dog hates this time of year for one reason- fireworks! You think after 10 years he get used to them but nope! He starts shaking a panting and starts following me around the house. I feel like he hasn't been on as many walks as usual this week because of me being in hospital and my mum spending most of the time when she wasn't working visiting me so I do feel bad . He was really glad to see me when I got discharged today, you can tell that he misses me!

    Winnie and Lola- They’re bickering as I write this, I’ve just put food in for them and they seem to been stealing the lettuce from each other and making a purring noise (which if they don’t speak guinea pig, means they’re telling each other to go away!). I’ve found out they both (particularly Lola) seem to really enjoy watermelon. They've had a couple of days where they haven't been out of their cage so were running around very energetically when I got them out tonight. I've missed Charlie and them so much so I'm so happy to be home.
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    Hey everyone on TSR!

    I hope you are all well, I'm pretty sure I haven't made a post since September (sorry!)

    So I just thought I'd update you on what's been going on in my life these past few months:

    1) Psychology- So I've been in and out of hospitals and had like a million and one appointments at the end of 2017 and as I result I've missed an awful lot of lessons! So back in November time I made the decision to take an extra year of psychology. So I'm going to go to as many lessons as I can from now until May time and then in September I'm going to repeat this year. I'm hoping that this way I'll get a better grade (as I'm aiming for an A*/A grade) by doing it this way and I'll be a lot less stressed in general which will should prevent my physical health from getting much worse whilst also protecting my mental health!

    2) Chemistry- So I think I mentioned previously that I'm repeating year 1 of chemistry so luckily I'm not too far behind with that. Before Christmas I got 100% in my chemistry exam which I'm so so pleased with. I have a lot of practicals that I need to do write ups for though and they're just piling up. I have a guest speaker coming in for chemistry in Feb so I'll update you with how that goes. I'm also FINALLY on the register now so I can be entered for exams etc (yay! ) and my attendance isn't going to be severely affected anymore.

    3) Media Studies- OMG. Media is by far the a level I find the hardest, purely due to the fact that I don't really enjoy it whereas I love studying Chemistry and Psych. I made the not so genius plan to start over on my coursework which I really do not recommend doing because omg it is so stressful!! My laptop stopped working yesterday (it's kind of okay now) and I lost my whole research essay! I'm so so annoyed but I'm hoping to have it done by the end of the week as I know my endo pain will start to get worse again in around a week or so. Another reason why media is stressful is the fact that no one in my class ever really turns up, luckily for me that does mean that I haven't missed out too much content and my teachers are really really lovely anyway. I've just got a new media teacher who is now also my tutor and I get on really really well with her which is perfect!!

    4) Biology- So I may have already mentioned this I don't remember but I have made the decision to drop bio as 4 subjects felt like too much for me. I would have dropped media but as i already have an A at AS (which is on the old spec) it felt silly for me to not continue with that.

    5) Study With Me- So over the weekend I filmed a little study with me which isn't the best in the world as it's my first ever video. It's only 60% loaded onto Youtube atm but as soon as it's uploaded I'll let you know and put a link [here]. I was quite ill on the Sunday but I wanted to share that with you anyway because if there's any other spoonie students out there I want you to know that you're not alone!

    6) Mocks!!!- At the end of Feb- beginning of March I have my mock week(s). I'm pretty scared just because of how much content I have missed but my teachers understand it's not my fault and they're telling me not to worry but I can't help it! I worry constantly. So I'll be posting about how I manage to prepare for them.

    7) Physical Health- I'm getting so frustrated with doctors not helping me at the moment. Last week I had really bad dizziness and was fainting quite a bit, my doctor told me that my bp was low but didn't tell me what I could do to raise it (suggestions please!) so that has really impacted my life, I mean the dizziness is an ongoing problem but it's got worse recently and although I'm still feeling really faint, I haven't passed out in like 4 days which is great!
    I asked to be referred to an endo specialist outside of my area after speaking to the helpline at endometriosisUK (who were lovely btw) which I know I have a right to do but my doctor still refused so I'm pretty annoyed about that as I just want help!!!
    I also may know what's wrong with me and it's called hEDs. I mentioned at the beginning of the year that i had suspected fibromyalgia well after reading through the criteria of hEDs I really think that it's a possibility that it is that. I have hypermobile joints so I asked to be referred to a rheumatologist to get a diagnosis because this pain is taking over my life! And my GP again said no...hEDs is the only Eds type without a genetic test so the rheumatologists would be my best bet at getting a diagnosis but my GP was no help at all!! I asked what I should do as I'm in so much pain constantly and he said to just take pain relief. The problem is pain killers are not a solution, I have no quality of life because I'm either in pain or out of it from the meds. I'm so fed up and I keep asking for help and not getting anywhere, my pain isn't being managed at all so I'm going to get a second opinion because I refuse to live like this, I will keep on fighting! I'm might do a whole post on my chronic illness(es) if anyone would read it as it's a really hard thing to be going through!

    8) Mental Health- My PTSD and anxiety symptoms are getting a lot better with the help of counselling and two medications but my chronic pain/fatigue/illness is really getting me down and I've just had enough. I'm trying to stay hopeful but some days it is really really hard!

    9) My Life- Okay so in November 2017, I got into my first relationship which is pretty scary! Things are going good but I do feel i can seem withdrawn at times due to my history. I have asked for some space until after my mocks though as education is my main priority atm. I think I'll do a proper life update at some point in the future!

    10) The animals!- Both the guineas (Winnie and Lola) and my dog (Charlie) are all doing well, Charlie has been going on runs with my mum and he's loving it! I brought him some treats and toys the other day which he loves! Winnie is becoming more and more vocal, she responds to my voice and even lets me stroke her when she's in the cage! Both of them love zooming around their cage and popcorn a lot (google it, it's so cute!). They're also loving floor time but omg it's so difficult to get them back inside the cage!!


    So I think that's all for now! My video is now on 75% so it will be uploaded before we know it! Winnie's hungry and speaking at me so I need to go and feed her!!

    My goal this week: To try and attend every day at sixth form this week, even if it's just for 1 hour and also to finish my Media report but I'll update you on how that's going.

    Thanks for reading, let me know how you're doing!
    XOXO
    Bethany
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    23rd January 2018-

    Okay so remember yesterday when I said my goal this week was to attend sixth form every day, guess who's failed that already? Me ofc.
    So I was extremely hopeful that my health wasn't going to be too bad but after being up all night with the worst joint pain I have had to this date, I realised that that dream wasn't going to happen. I emailed my teachers and asked if they could send me the work so I could work from home, still trying to be optimistic that I would be able to do stuff despite needing assistance to get down the stairs but in the end that didn't go to plan either, I took some slow release oxycodone and that worked wonders for the pain but the side effects still stopped me from functioning well, it's okay though, today didn't go to plan but that doesn't mean that tomorrow has to be ruined, I'm still refusing to let my illnesses beat me and I will get to where I want to be in life, it just might take me a bit longer than other people.

    I really want to document these bad times because I know that for me reading other people's experiences helps me realise I'm not alone (Dear Evan Hansen reference!) And if there are any zebras or spoonies out there that have got through the dreaded alevels please add to this thread!

    I try and seem optimistic but if I'm being honest I'm scared. Terrified in fact, if I can't manage a week at sixth form how on earth am I going to be able to work!? But then I tell myself that someone will help me get my pain under control, eventually someone will stop invaliding my pain because I'm 'too young' or whatever other excuse they decide to use. I spoke to someone from the charity endometriosis UK today (I can't recommend it enough to anyone that has/suspects endometriosis or anything to do with painful periods, although for most of us with endo it's a lot more than just that!). Anyway, they told me that my GP was wrong and I have every right to be referred to an endo clinic and see a specialist so I've made the decision to change my GP surgery, if they won't help me then I'll find a doctor who will, I will push and I will fight to get what I need, I've had so many hurdles already but I will not be beaten. I also want a 2nd opinion on the possible EDs that I could have, I know referrals are a pain but I have as much right as anyone does to see a specialist so to all of you chronic illness warriors going through something similar, know that it will be okay because I believe in each and every one of you and admire everyone who is having to go through something this painful.

    I don't really have much else to say, I will update you soon with how I'm doing and whether I manage to get in to sixth form, I'm actually devastated that I missed double child psych today! Tomorrow I have another session of the emotional regulation course which I'm still not sure is for me but I'm going to try it for a bit longer ig, even if it doesn't help, it's experience for when I do child/clinical psychology! Oh! Another thing, I have an opportunity to try something called tDCS (Transcranial Direct Current Stimulation) to see if it will reduce my anxiety as part of a psychology study, I'm going to talk to my psychology teachers about whether it's ethically okay etc because I don't want to do anything dangerous!

    Little pet update- both my guinea pigs can now go under my sofa and omg it's a nightmare to get them back in their cage! I was feeling down about my health and the two of them cheered me up so much, I will post some pictures and stuff soon I promise! I'm so luckily to have such wonder pets!!!

    Thanks for reading this! (although I don't think anyone actually is!)

    XOXO
    Bethany <3

    (Oh also, my dad told my mum he doesn't think Ryan (my brother) should do alevels because it's only like 15 hours/week so they're 'too easy'. EASY??? Alevels pfffft. I'm still in shock about that tbh, he didn't even do anything past GCSEs so I have no idea how he can talk!)
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    I really love the blog. :hugs:

    Your resilience despite everything piled up against you is sooo inspiring. I'm a fellow A Level student with MH problems, it's so nice to see you be so positive and full of good energy. I'll definitely be following along.

    In terms of others who are studying with chronic illnesses, you should have a look at the Mental Health Support Society on here. As far as I am aware, there are quite a few people on there with chronic illnesses and studying too.

    Best of luck with finding a better GP, you've got this! :jumphug:
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    (Original post by darkforest)
    I really love the blog. :hugs:

    Your resilience despite everything piled up against you is sooo inspiring. I'm a fellow A Level student with MH problems, it's so nice to see you be so positive and full of good energy. I'll definitely be following along.

    In terms of others who are studying with chronic illnesses, you should have a look at the Mental Health Support Society on here. As far as I am aware, there are quite a few people on there with chronic illnesses and studying too.

    Best of luck with finding a better GP, you've got this! :jumphug:
    Thank you so much! I really appreciate it! I will definitely check out the MH forms Hope things improve with you soon, I know how hard mental illness can make things!! xx
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    Hey!
    So I think it's been around a week since I last made a post and tbh things are becoming really difficult for me!

    1- Absence from Sixth Form
    I'm beginning to get stressed out now as I'm having the worst flair up I have ever experienced! Last week I decided to email my teachers to update them with what was going on because I feel like communication is key when you have to miss pretty big periods of school time. If you're going through something similar I'll show you what I said as it could help.
    Spoiler:
    Show



    Hi all,



    I’m having an extreme flair up of joint pain and I’m struggling to walk etc. As a result, I cannot get into sixth form, I was wondering whether you could send me the work for this week and I will try and complete as much of it as I can at home. I’m really sorry and will try and be back asap but at the moment I’m struggling to get my GP to refer me to rheumatology and actually take me seriously.



    I am in touch with both endometriosis UK and EDs UK (who are both absolutely amazing charities) and I am trying to sort things out with them so I can see specialist. It’s a very long process but hopefully I will get the pain under control soon.



    I’m really sorry for being such an inconvenience. If you have any concerns or queries please either contact me or my Mum, Clare at [mum's email] and if there’s any work sheets or anything please can you give them to either my brother Ryan [last name] (year 11) or my friend Mollie [last name] (year 13).



    Thank you and hopefully seen you soon,

    Bethany



    Thankfully my teachers, as always, where extremely nice about it as they know I wouldn't miss anything unless I absolutely had to. Sixth form has been so accommodating so far and I'm so so lucky to have such an understanding support system as if it wasn't for them I think I would have had to drop out last year, which would have been so unfortunate as I love love love learning (especially psychology!)

    2- Another week, another appointment
    So after my conversation with Endometriosis UK last week I booked an appointment with a different Doctor (I'm still planning on moving to a different surgery but just haven't had the spoons [energy] to do it yet.
    Anyway, my doctor was much more understanding, he agreed that I was hyper mobile and after a quick google search felt I presented a lot of the symptoms of hEDs (such as stretchy skin, easy bruising, wide sprain pain, joint subluxations - particle dislocations, and other illnesses which could be linked) so I FINALLY got my referral to the rheumatologist, last week I was close to giving up but with the support from my family I keep pushing and got one referral that I needed. Although my doctor did state that rheumatology might want my to be referred for more tests before they see me (it's a slowww process).

    In terms of referring me to the endo clinic, my doctor told me he wanted me to talk to the gynae team at my local hospital first (as I have an appointment with them on Friday - which I waited four months for, when it should have been 4-6 weeks!) because two referrals at the same time might cause problems, which I completely understand where he is coming from. So I need to book yet again another doctors appointment after I see gynaecology.

    And for the last cluster of symptoms I guess (my dizziness/fainting/rapid heart rate) he just wanted to keep an eye on it for now- which is annoying as it's causing me a lot of problems. He did suggest mobility aids but I'm not sure i've accepted being ill that much yet so I would feel really uncomfortable using anything like that at the moment. So again that's causing me a lot of issues in terms of my quality of life and ability to continue into further education.

    I'll probably make a post in the future just to explain more about hEDs and how that affects my body.

    3- Flair Up
    So earlier I mentioned my pain was really bad and I kind of know why but think it could be seen as TMI (it just mentions period etc which is what endo centres on) so don't read this if you don't want to but I want to put as much out there as I can in case anyone on TSR is going through the same kind of thing.
    Spoiler:
    Show


    Okay so basically, I'm just going to copy and paste a quick thing about endo here: 'In endometriosis, cells like the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.' (taken from Endometriosis UK). So every case is different but for me personally I used to get pelvic/thy/lower back pain all the time but since stopping a medication, I only get pain during ovulation and my period and at the moment I'm on my period which gets worse and worse each month. I'm prescribed so many pain tablets for it - 100mg of Tramadol, 30/500mg of co-codamol, 1000mg of metafenamic acid and 1000mg of tranexamic acid, which do provide some relief however mine get so painful that I often have to be admitted and given oramorph (which would be fine, only some doctors/nurses are really funny about giving it to you and that means you're left in a lot of pain). I also treat the pain with a TENs machine, heat therapy, breathing techniques and distraction (I make bracelets quite often which I find easy to focus on, it can be hard to find things that work as to quote the fault in our stars, 'pain demands to be felt' and with all the meds I'm on my concentration is severely impaired!)
    I was on the mini-pill but it gave me pretty severe suicidal thoughts so my risk from a psychological POV was too high to continue this treatment which is why I'm still having to have a period and omg it sucks! I can barely move around.
    And because I was already having a pretty bad joint flair up, the hormones from my period are making the joint pain worse apparently. So I'm really not sure if I'm going to be able to avoid the hospital this month


    4- Last weeks goals
    So as you already know if you've read my previous posts, my plan on attending sixth form every day last week failed miserably. And as frustrating as it is, I can't beat myself up about it. I tried my best and I couldn't have done anything else and everyone is aware of that. I didn't chose to be sick. missing lesson was not my fault and I have to remind myself of that when things don't go to plan. They'll always be another week when I will have some good days and be able to attend the whole week but this week and last week are just not the right time.
    However, I successfully achieved my other goal! (well kind of, I did do some last night) and I can now say my media coursework is done and handed in! It's not the best piece of work I have done I will admit but I'll attach a couple of my magazine pages so you can see what I've achieved this year. (You'll have to wait for these actually as TSR isn't working for me!)

    5- Planning my best friends birthday
    My amazing, supportive best friend turns 18 in March and I wanted to do something special for her, as she has been there for me through the rough few years I've had and I'm enterally grateful for that, so I booked tickets for me and her to go and watch dodie in Birmingham which I'm so excited about!! I'm struggling keeping it a secret from her! It's a lot more then I'd usually spend on a birthday but I feel like she deserves it so much and it's a little treat for myself as well, as my illness prevents me from having a proper social life ig. Now I faint from standing up for too long, especially in the heat so at first I thought there was no way I could do this, last time we went I ended up in first aid for half the show . So I emailed the venue and managed to get a seated area as well as 10 minute early entry to allow me to find somewhere to sit, I'm bringing all my medical items with me as well as things to cool down so hopefully I'll be okay this time! (This put a really positive spin on a not so good week and I finally have something to look forward to which is great!)

    6- Study With Me
    Forgot to share the link which you last week but here's my YouTube video which allows you to get some insight into how my illness affects my studying. It's not the best video in the world, it's actually my first one so here it is: https://www.youtube.com/watch?v=SXN8QZR5Szg

    7-This Weeks Goals
    Okay, so for reasons which I mentioned earlier I'm not sure if I want to set myself any real goals this week as I know my body and I don't want to set my self up for failure so academically I think I'm just going to do my best to get some work done and make sure I know what I need to catch up on when I feel a bit better. (I managed to make two lessons on Monday despite the awful pain and I'm actually really proud of myself for that as it's a lot for someone who is sick like me, although I couldn't write or type in one of my lessons which wasn't the best). I only have one lesson tomorrow so I'm going to attempt to go to that depending on how tonight goes. I also have my LIFT psychology course which I need to try and attend.

    As it's a bad health week, I'm going to set myself some self care goals, firstly I want to drink between 2-3 litres of water/squash a day as this will help with the dizziness and muscle cramping. Secondly, I want to eat before I take my pain meds, despite the nausea, as they can damage my stomach without food and my final goal is to give myself a break and not beat myself up over what I can't do and instead celebrate what I have done because every little thing matters when you're in chronic pain.

    One last thing I'm going to try and do is be assertive in my doctors appointment and not let them dismiss my pain as it may be an invisible illness but I know for a fact that it is real and I need treatment, i may even get my sixth form to write a note I can give my gynaecologist saying something like they are concerned with my low attendance due to my pain.

    8- Pets
    I can't miss out my pets! Charlie has been lead on the sofa with me this week, he can sense my pain and makes an awesome emotional support animal. He is the most caring dog in the world!
    Also, Winnie is till trusting me to stroke her when she's in the cage, most of the time anyway, she's always been fine on my lap but I feel like I've really truly bonded with my guinea pigs now which is lovely! Winnie can also get under the sofa and omg it's such a pain to catch them after floor time! I fainted in my room the other day and when I became conscious I noticed the piggies where hiding, I think I scared them!!

    Sorry for the long post, I just really enjoy writing these posts, it really does help me to work things out in my head. Thanks for reading (especially if you've read this far) I think I'll do a quick medical update in the week just to inform you on what is going on with me, I don't think they'll be anything academic for me to say though as I'll probably be off sixth form until the pain settles down again. I know this is about being a student but my medical stuff is really affecting my education which I why I've chosen to include it but if you don't like it then let me know and I'll stop (or put less in).

    Until next time,
    XOXO
    Bethany :lazy:
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    Hey everyone! Hope you're all well Personally, I've found that this week has been HARD!

    1- Pain
    So on Tuesday, I started to get really intense stomach pain from my endometriosis which I think the worst I have ever had it. I rang my mum at work (she works at A&E) at 1am crying as the pain was so severe that I passed out in my hallway and ended up throwing up. So she came home and took me to A&E, they monitored my heart rate which showed I was experiencing tachycardia (which mean my heart rate was going over 100 bpm - which is very common for me since my dizziness has been bad). So they kept me on an ECG for a few hours and it didn't slow down, I had some IV anti sickness medication and well as diclofenac (an anti-inflammatory) and some Oramorph (oral morphine) to help with the pain. Eventually, I was moved into the gynae ward and had an ultrasound the next day which was fine so they are considering another surgery - which I'm not sure I want! I was such a mess in hospital, I did film little bits as I wanted to make a chronic illness vlog (as chronic illness youtubers have been really helping me recently!) so I may show you how bad the pain was. Here's some great pictures I sent to my friend:
    Name:  IMG_8733.JPG
Views: 61
Size:  108.5 KB(My ECG - pretty sure 103 was my lowest hr)
    Attachment 723222723224(I have no clue what this is? A lot of wires and my arm?)
    Attachment 723222723224723200 (Great photo of part of my head)
    [attach]7.232227232247232e+23[/attach] (my hot water bottle/legs in cubicle 6 in A&E)

    2- Gynae Appt
    So last week I mentioned I had an appointment with Gynaecology on Friday and I'm still pretty annoyed about it. I filled out forms from endometriosisUK about my symptoms which personally I found worked really well, as well as had a pain diary from Oct-Jan and I made my head of sixth form write me a letter to discuss the extent that my pain was affected my education (apparently they should sped up the process because of this). Were they interested? Nope! My appointment literally lasted 5 minutes and they told me they'd put me on ANOTHER waiting list to get the coil and explore the possibility of more surgery. (which they had already told me 4 months ago when I was an inpatient). They literally told me that I had to wait for an outpatient appointment as they could spend more time on me which is fair enough I thought. But when my 5 second appointment was over I did feel pretty annoyed that I've endured 4 months of pain for nothing. don't get me wrong I love the NHS but it is so so so underfunded which is extremely annoying when you are sick!

    3- Sixth Form Work
    So you may have guessed that since I was hospital, I couldn't go into sixth form so I have, when I was able to, done some work at home. I watched Submarine for Media Studies and did a lot of pages of organics work for Chemistry - which I love doing! (Although my teachers were asking me to draw methane and 1,1,1,1-tetrachlorobutane which don't exist and confused me for wayyy to long). I have my mocks coming up after half term so I'm really trying to catch up with the work, which I don't think is humanly possible but I will still try my best.

    Honestly, I think that's all I have to say for this week, it's been a crazy one but not much has happened at all in terms of academics. I have a 4 lesson day tomorrow which I hoping to do but I'll let you know how that goes!

    My goal this week is just to attend most of my lessons and I'll keep you updated below.
    Tuesday- 4 lessons
    Spoiler:
    Show



    I managed the whole day today!! (That sounds so stupid for most people but it means a lot to me, any chronic illness warriors will probably understand).
    I am DEFINETLY paying for it though, my joints are not impressed and I did come home with a migraine.



    Wednesday- 2 lessons (but may clash with an appointment)
    Spoiler:
    Show


    I did both lessons! Well technically, I did 50 minutes of one of my lessons as I didn't get back from my appointment until 13:10 but that's okay.

    I also did an extra psychology revision session which I found really helpful


    Thursday- 3 lessons
    Spoiler:
    Show



    No current info



    Friday 2 lessons
    Spoiler:
    Show



    No current info



    Thanks for reading and I'll update you soon xx
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    So today was my first full day back at sixth form for a while and I can't believe I actually managed it! I had four lessons, double psychology which was really fun, we did the 'strange situation' observation using one of my teachers and her son and that was very interesting and I feel I can imply my psychology knowledge to my evaluation which I'm weirdly excited about writing (Honestly I love psychology so so so much and doing it just makes me so unbelievably excited).

    Next up was Media which involved looking at the industry for the film Submarine. Okay, so I may have got a bit bored this lesson, mainly due to feeling ill but I'm still super impressed that I got through it.

    Then I had Chemistry which I just answered a load of organics questions (organic chemistry is my fav!) as the class were doing an experiment that I had already done. I have a problem actually, I'm probably going to create a separate thread but thought someone here might be able to help, so my doctors suspect I have postural orthostatic tachycardia syndrome (PoTS) and this basically means that my blood vessels don't contract properly making my blood pool in my legs whenever I move into an upright position, unfortunately this means when I stand up my heart beats really really fast until I end up collapsing. Now in Chemistry, I have to do several practicals which require standing for like an hour, which I cannot do. Especially as I'm handling chemicals, I feel like I'm a bit of a hazard to myself and the class. The problem is I need to do these practicals to get my endorsement which I need for uni. What do I do???

    I didn't do much work when I got home as I felt really ill and I know if I push it too much, I'll end up in bed for days so I made myself stop and decided to rewatch some of submarine (for my lesson tomorrow). It's annoying as I have mocks coming up so want to do a load of revision but I know I have to listen to my body first

    I did take my dog to the shop (to buy painkillers/headache patches/guinea pig food - you can tell what my life revolves around!) which is another achievement for me as I didn't pass out! And the guinea pigs are very grateful for their veggies!

    I know my day may seem like a pretty average one for most people but for me it's a successful one and I'm really proud of myself, also my body is not. I'm getting a LOT of pain (including pelvic pains which shouldn't be playing up at the moment - weird!) so I'll let you know whether I manage to get through tomorrow.

    Thanks for reading
    XOXO
    Bethany <3
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    Huge congrats for having a productive day today! :hugs:

    Best of luck for tomorrow, wish you all the best :cube:
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    Unfortunately seems like you got a pretty standard gyenocology appointment. I had to wait 24 weeks for mine and all they said at the end was "injection or coil, nothing we can do for you". Your options are surgery and/or coil, sadly. :sad:


    Good luck with your A Levels!
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    (Original post by darkforest)
    Huge congrats for having a productive day today! :hugs:

    Best of luck for tomorrow, wish you all the best :cube:
    Thank you so much! I really appreciate it


    (Original post by Airmed)
    Unfortunately seems like you got a pretty standard gyenocology appointment. I had to wait 24 weeks for mine and all they said at the end was "injection or coil, nothing we can do for you". Your options are surgery and/or coil, sadly. :sad:


    Good luck with your A Levels!
    I know, it's just annoying that my health is now having a significant impact on my education which really sucks. And for some reason they want to sort out one problem at a time, so although I have suspected PoTS and EDs (which need referrals to confirm), I'm relying on gynae to help with my endo first tbh. I'm going to try the coil but it's annoying that I have to wait to see them again, and they haven't given me a timeframe. It's so frustrating, still I think I'm getting referred to an endo specialist so hopefully they can try and help me some more and I think my rheumatology referral has gone through so once that's out the way I can go to the cardiologist. The life of chronic illness never seems to end.

    Thank you so much!!
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    Hey!

    So today I had a psychology lesson, then I had a mental health course/appointment and finished the day with a media lesson (and then I went to a revision session for psychology which wasn't compulsory).

    My psychology lesson was on attachment, I found it hard not being in for a while and then coming back because my learning isn't consistent and it gets very confusing - even if I do try and catch up from home. But I did manage to link the stuff to previous things I've learnt through therapy (about PTSD so I could tell how to help children with a insecure disorganised treatment - perhaps the one positive that's come from having a mental illness).

    Then I had a free period so I got to do some research on the representation in Submarine, all I'm saying is the cinematography in the film is beautiful when you look into it! This is the first piece of media text this year that I've enjoyed which I'm so so happy about. The film is weird but still enjoyable and I would deffo recommend it (it's on YouTube).

    Next was my emotional regulation course, although I feel pretty mentally healthy at the moment I'm still attending the sessions as sometimes things can go downhill very quickly so it's good to learn how to help myself out of those patches. I did talk quite a bit today, which is uncommon for me, but it really linked to my psychology and I couldn't help myself!

    Then I went to media and was of course very excited about my research but I always struggle to get through media lessons. I just don't find them as interesting as Chemistry and Psychology so I find I struggle to remain focused more, if that make sense?

    After that I went to a psychology revision session, my teacher gave me the sheets I've missed which was helpful. I told her about a book I'm reading based on psychology called 'the man who mistook his wife for a hat' and she ended up buying it! Both my psychology teachers (well all my teachers really) are so so so lovely and I honestly feel so lucky to be studying where I am.

    So yeah, that was my day! (I'm sorry these posts aren't very interesting!)

    I'm going to do some chemistry revision now (I've taken like a 4 hour break from work and I actually feel okay now!!) and then get out my guinea pigs before getting a reasonably early night as I have to be up early tomorrow - my mum has work so I have to get the bus into sixth form due to my fainting spells so it means I have to be pretty early to sixth form but oh well!)

    Once again, thanks for reading!! Any comments are very much appreciated
    XOXO
    Bethany
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    Also, are daily updates annoying? Should I stick with weekly ones idk?
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    I absolutely love the daily updates! :cube:
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    (Original post by darkforest)
    I absolutely love the daily updates! :cube:
    Thank you so much!! Glad to know I'm not just talking to myself :laugh:
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    One more day till half term! Yay!!

    I think I forgot to say yesterday that for some reason I wasn't registered for my AS chemistry and A2 media exams! I managed to sort that out today so I'm quite relieved.

    Also, you know how I said I'm having problems with doing Chemistry practicles because of my fainting/dizziness, I spoke to my chemistry teacher today and he said he's had students in the past was similar issues and there's some practicles I can sit down for and the for others i'd literally just tell someone what to do so that's sorted!

    Today did not start well, I really did not think I'd manage to get in, I woke up slightly late and my dizziness was bad, usually I'd sit up in bed for around half an hour but because I didn't have time I got up too quickly and ended up passing out! Still I kind of attended all 3 of my lessons today.

    So I was late for psychology which was annoying but the main thing is that I got there in the end. The important thing is to focus on what you have achieved in the day rather than what you haven't achieved and I got in even though my body felt like it was refusing this morning and mentally I feel so much better for it!

    In media I admittedly didn't work that much, I watched Straight Outta Compton and made some notes which was perfect for me as my pain was flairing up.

    Then I had a free and just went over some chemistry questions and did catch up a bit with me friend - we were discussing our previous topic on radio and realised that we have not covered the right content at all! (we've changed teachers since doing it). We really didn't want to stress out our current media teacher (esp. as she's moving house at the moment so is already quite stressed!). But we decided to just do it and she was lovely about it, we said we'd so some research into our next topics to help out and we're going to start revision sessions (although no one turns up to the actual lessons half the time so it will probably just be me and Mollie!)

    Next was Chemistry which I really enjoyed BUT my exam board have made some changes which was stressful to learn but it's all okay now. My teacher has a doctorate in Chemistry and said he was complaining to the exam board about it for years as they had the wrong info in their specification!

    I came home and I haven't done much yet! In terms of health stuff, I've got an appointment to have the coil placed (which I'm TERRIFIED of). Also, it's during my mocks and might make me quite unwell for a days so I may have to take them at a separate time (I'm not sure yet!) and I booked my rheumatology appointment, I tried yesterday and could only get an appointment in June but when I went on today I managed to get an appointment in March so I'm really pleased with that!

    My plans for this evening are counselling at 6pm (which has been amazing and has reduced my flashbacks/panic attacks SIGNIFICANTLY), then I need to come home and do some Chemistry revision before completing a chemistry past paper (work set for today as my lesson was cancelled).

    That's all for today (probably)
    XOXO
    Bethany
 
 
 

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