On Sleep and Chronic Illness

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Sleep. What an interesting and topical topic. Seeing as sleep is essential for the functioning of the immune system and many people are struggling to sleep right now because of anxiety associated with the pandemic, I figured I should write about sleep and how to help with sleep as someone with chronic illness.

I feel like us spoonies struggle with sleep in two different ways. We either sleep too much (hypersomnia) or just cannot sleep (insomnia). Personally I struggle to stick to a normal 9-5 working sleeping pattern due to pain and nausea and because my ME seems to like the hours from 9pm onwards more and hates early morning rising. Many times I’ve gone into work on 4 hours sleep or less. I can easily sleep 10+ hours a night and have naps throughout the day when I’m in a flare. So I guess I go both ways…

Sleep is essential and not having enough of it can make it that much harder to get through the day or make us hyper tired and delerious and then crash later. So if your in the camp that is struggling to get to sleep at night or struggling to get to sleep early enough because your body clock is just against that 9-5 life then here’s a few tips.

  1. Have a wind down routine Although some people can just switch off and yeah I can sometimes, most people can’t. Be it having a hot bath, doing some yoga, reading a book, watching some TV or a combination of the above a wind down routine is essential for a good nights sleep.
  2.  Try to go to bed and get up at the same time every day. If you work I’m sure you’ll relate to not sleeping great on a Sunday night because you slept in over the weekend. Going to bed and getting up at the same time can have a demonstrable impact on your sleep.
  3. Sleep tea/night tea can help. I drink the Pukka brand of night tea.
  4. Don’t stress about not being able to get to sleep. For some it helps to get up and do something and for others it doesn’t.
  5. If you can,  spend your day somewhere other than your bed, and ideally your bedroom.
  6.  If you have night meds to take that may help you sleep take them in good time. This does two things, helps you fall asleep on time and means you feel less drowsy in the morning.
  7. I listen to podcasts/audio books to go to sleep, I find this helps occupy my brain whilst I’m trying to sleep.
  8. Putting lavender oil on your pillowcase is known to help with sleep
  9.  Try to limit your caffeine intake, especially past early afternoon!
  10. Finally, if you struggle with sleep because of pain try putting pillows under in-between different body parts (For example in-between your legs)

I hope this has proven helpful, there are many other tips and tricks floating around but I wanted to keep it to 10. What helps you sleep?

 

It’s okay to gain weight in isolation

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I’ve seen many a meme about weight gain in isolation. Which although funny and I relate really isn’t okay. Why?

Because these memes make it seem as though weight gain is something undesirable during this time and can be triggering for people recovering from eating disorders such as myself. We’re already in an unprecedented situation which is quite stressful for many people, this in itself can make it much harder for people in recovery from eating disorders to maintain that recovery. Memes, jokes and TikToks about the weight we’re all going to gain in this time simply isn’t helpful and may be enough to tip someone over the edge.

So I thought I’d pop in here and say that it is okay to gain weight during this time. Partly to reassure myself but also to reassure others.

We are going through a collective trauma. It’s only natural to eat more. Eat more “junk food” I hate that term, all food is good food in moderation. And we may be unable to eat as much fresh food as we would like. So yes, when combined with a reduced activity level due to gyms being closed and a lack of motivation/energy because we’re going through a collective trauma we may gain weight during this time.

But that’s okay. We are not defined by our weight. When was the last time you chose your friends based on their weight?

Hopefully never. We are worth so much more than our outward appearance.

From a health perspective yes being obese can give rise to health complications. But our bodies all have a set point, and you are unlikely to go much above that during this time. Furthermore, any weight you have gained is likely to naturally come off once this is all over.

From a health perspective, giving into restrictive eating disorder tendencies is going to be more damaging. Studies have consistently shown that being underweight is more damaging than being slightly overweight and coping mechanisms such as purging can actually be really dangerous and affect your electrolyte levels as well as risk damaging your esophegous and teeth.

It is okay to gain weight. It is okay to stick to your meal plan even if you think your less active and don’t need it. It is okay to eat what you want. There is nothing wrong with that chocolate, those biscuits or those crisps.

All food is good food and you deserve to eat it. Be kind to yourself. Just getting through the day is enough.

 

Words from an ME flare

I’m in the midst of an ME flare, something I should have seen coming. Something I should have got a grip on the second I noticed it starting nearly a month ago now. Many thoughts have gone through my head. If only I took a sick day at the time it started. What if this is now my new baseline and even sitting up feels like running a marathon again. What if I lose my spirit, my soul and stop climbing. (Spoiler alert, I won’t. But what if I’m forced to). Climbing is my identity, my passion and my sanctuary. I can’t bare to lose it again.

That aside, living with ME is HARD. Especially in a flare up. When everything is so unknown and you are so unbelievably drained that you can’t even put up a false front anymore. When you feel all the guilt, all the worry that no one believes you and thinks your just trying to get out of life and the fear. It can be hard to not let it take over and mess with your mental health, which is really needed during these times.

It’s hard to go through your body being so drained that you just can’t anything. Living with an illness more commonly known as “chronic fatigue syndrome” when it’s more than just fatigue. It’s impossible for people to understand due to the fluctuations in and dare I say it, the name and lack of research into the illness. No one sees us at our worst and often people see us looking okay when the reality is we feel the opposite.

In these times, when you have 101 things to do and aren’t up to one of them it’s important to have grace and alongside that have faith that it will get better. You can only do so much and sometimes flare ups happen with no reason behind them and no fault of your own. They just happen.

I find my faith helps me. Cheesy as it sounds and I know it doesn’t help some people but god does have a plan. I may not be a practising Christian in the sense that alongside other commitments I do not have the spoons to go to church. Nethertheless, dealing with what life throws at me with grace and having that faith is a key to me coping with this and not getting eaten up by it.

It’s hard and it takes practice but it’s so so necessary to deal with this chronic illness life.

 

 

A week of prevailing and failing through pain and fatigue.

It’s time for another week in the life. This past week has been characterised by lots of pain, lots of fatigue, getting lost and climbing.

Monday was my first day on the difficult cases at work and it was so much more fun than work has been! I found it much easier to get through the day with a little more cognitive stimulation. I went for a climb in the evening and took it easy as my elbow was causing me pain at work and I didn’t want to do any further damage. I spent a lot of time chatting to people which is one of my favourite things about bouldering and did a lot of technique/route reading practice and flashed a purple (v3-4) for the first time ever! (Yes I flashed a V3-5 over xmas but different centre so I’m taking the glory again.) Although I love projecting I really want to get myself more consistent and that purple was an important step towards that.

Tuesday was a bad endo day and not great mental health day as I was a stressed out mess over the GP appointment I had the next day and pain wears you down. I got home and I just couldn’t and hilariously enough the pain just got drastically worse once I was home. Isn’t potentially having endo, potentially having PCOS, potentially having something else all together so much fun. Anyway. I went to bed early got 11 hours sleep and on we go to Wednesday.

I had a GP appointment and she actually took me seriously and listened. I had to find my way to the hospital after the appointment and got a little lost cause the cold and google maps drains your battery. But, I found my way and got the 3 viles of blood taken. I am also getting another ultrasound at some point. I think of the transvaginal variety. Absolutely not looking forward to that! Went into work for the afternoon and god were the cases bad. Or maybe I’m just a bad caseworker. I then climbed and not gonna lie my right bicep is still sore as we were doing endurance stuff and being me, I may have pushed it a little too far but it did feel really good to be in the training area, doing actual exercise like the old Han would be. I also resent a purple after the session which is mad! I’ve never resent a purple before. *Slight disclaimer here is yes in grades, yes 4 years ago, yes before I took 3 years out* It was another sign towards me slowly getting myself towards my goals.

Thursday was a horrific endo day. How I worked and smashed my stats I will never know. But anyway, I got home, applied for a law event and then accidently napped. Woke up, got ready for bed and then slept for another 10 hours.

I felt beyond dreadful on Friday. But I powered through the bad cases and got as many grants as I could. Didn’t hit stats but what can we do. Not much. I literally just crashed when I got home and ended up with that horrendous midcycle migraine. You know the one so painful that you can’t eat, can’t do anything, can’t tolerate any light but also can’t sleep. It was traumatic.

Nevertheless, I took myself on a trip to rock over on Saturday and although I didn’t explore the whole wall, I spent 4 hours there! My hands were a wreck! I really enjoyed the different setting and movement that I had to do even on “easy grades”. I also felt super fancy on duotex holds and flashed a super fun lil v4 and the first few moves of a v5!. I did however aggravate my elbow again and have somehow aggravated the left one as well. My pain was horrendous Saturday night so again late night but got 10 hours sleep and still feel like hell so trying to rest as much as I can.

Post-Graduation depression

I guess this is a follow on from my post exam depression post and quick disclaimer – technically speaking I haven’t graduated yet, I graduate next week. But for all meaningful purposes – I have finished my final year at uni and am currently waiting for two provisional offers to manifest and stressing because I like to catastrophise and prepare for the worst – mentally.

Meanwhile I see everyone else getting on in life and doing amazing things.

And I feel a little lost. I feel like I’m not good enough –  I’m not trying hard enough. Hilariously today I’m pretty much bed bound due to my CFS. I can’t adrenaline my way through job applications. The research required for the training contract application that needs to be accomplished for the week is too much for my cognitive fatigue right now.  I feel like I’m not allowed to rest because I haven’t got THE job yet. As if not having THE job defines me as unsuccessful in comparison with everyone else.

Suddenly everyone is thrown into the real world – competing for that lucrative job. Because I have two provisional offers I’m not aggressively applying for admin assistant roles until September. I feel bad for that. I feel bad for putting my time and energy into training contracts and mini pupillages for that long term plan. (Essentially ideally I’d be a barrister but a solicitor would be the more secure way and I want that security. I am also not in a financially privileged position. I couldn’t work much throughout my degree due to illness. So a training contract and later becoming a solicitor advocate is more realistic).

I don’t know. Maybe it’s because my parents have always told me I can’t. They’ve never encouraged me or nurtured my ambition so I believe I shouldn’t have it….

And my parents and ambition nurturing is another blog post entirely, but I think that’s where it comes from.

It’s difficult managing the post graduate unemployed life. When you have limited funds and no income it can be hard to justify going travelling or paying £600 for that 3 day summer school that sounds really interesting if Job 1 doesn’t manifest. Both things I am contemplating. But volunteer abroad programmes are expensive (my travels would have to add to my CV).

It’s no wonder research shows over 40% of graduates suffer with feelings of depression. Because it is difficult. People expect things of you, you feel useless, like your somehow wasting time.

It is at this time that looking after mental health becomes so important. If you have chronic illness – don’t feel bad for resting when you need to. It is at this time that it is your responsibility and no one else’s to ensure you are well enough to be as productive of a member of society as is possible and realistic for you. Don’t feel guilty if you can’t fulfil peoples requests from you. If they give you shit about it – they don’t understand and unfortunately for some people (i.e my family) no amount of trying will make them understand. Take time for yourself  – do things you enjoy. Go on  a little holiday. Remember that this is only a temporary phase and that it will all work out in the end. Everything happens for a reason. God has a plan. Whatever it is that helps you get through.

You will be okay, you will get through this uncertain period. Yes it’s difficult but many of us feel the same. If social media is harmful avoid it – or just avoid certain platforms and remember that there is always someone to talk to.

ALWAYS.

Travelling with a chronic illness 2.0

 


Ask me now if I’d do it all again and I’d say yes! I’d do it again in a heartbeat.

Recently I’ve returned from a summer school to Colombia with my university. This involved a LOT of firsts. Flying alone for the first time, flying long haul for the first time, first time on a plane since developing ME as well as first time on a plane since I had a cyst rupture on my right ovary in an airport at 14. (Yes that experience traumatised me a little).

Now of course this wasn’t all smooth sailing. It didn’t even start as smooth sailing considering I woke up with a paralysed arm on the day I flew out and had to sit down to get dressed it’s some minor miracle I made it at all and without use of wheelchair assistance at the airports because I am far too stubborn for my own good.

The flight itself was better than expected. I thought I would get bored, considering the first plane was a 9 hour flight and the second one 3 hours. The reality was so much stress and adrenaline went into getting these flights that I spent much of that time dozing. Although I did manage to get the reading for our first lecture done (Only reading I did all trip) and watch Love Simon. So boredom wasn’t an issue. Pain on the other hand was. I was getting severe endometriosis related pain in my lower left back as well as severe pain in my lower left leg. And if that wasn’t enough my left collar bone decided it would be fun to act up. As our first flight was delayed by an hour it meant we had barely enough time to get to our connecting flight, this meant a hurried walk through the airport praying we’d make the plane on time and trying to keep our stress to a minimum. This was where fatigue was an issue – as my heart had been above 100 all day due to possible POTS and a confirmed diagnosis of CFS I was really struggling once I got off my first flight, despite spending a large portion of it dozing. I was honest about this, which was a step up from usual however persisted in the fast walking despite every inch of my body was screaming against it. I was fighting to keep my legs moving, I was lightheaded and started getting severe chest pain but I didn’t want to cause the rest of the group to miss the flight because I was slowing them down.

Fortunately we made it to Bogota, Columbia on our scheduled flights and made it to our accommodation. After having a shower, I went straight to bed.

Lesson 1: Get the wheelchair assistance – it will make the journey more comfortable and less stressful if you have tight connections which leave you sprinting across the airport. It would also be good for reducing payback and allowing you to get more out of your trip!

Fast-forward to 7 hours later, I woke up the next day feeling nauseous and feverish and genuinely thought I’d caught something off the plane. Go into the bathroom, look in the mirror and realise I have an autoimmune rash. (Which is always slightly terrifying as someone with no known autoimmune condition.) But obviously being me, I couldn’t say I needed the day to rest. I get restless being stuck in a room unless I am legitimately dead, especially in an unfamiliar environment. So I went out with everyone, had breakfast and a few of us walked around the city for a few hours. Which obviously was great for my pain. Again, when I was asked, I was honest and said I was getting a lot of pain but also being me, said I would be fine unless everyone else wanted to go back. We headed back, and I was told to rest, moaned a little, and then actually crashed for 5 hours upon getting back to my room. Went out for dinner feeling refreshed although was fading again towards the end and that was that.

Lesson 2: Take the first full day to rest! Don’t do what I did and walk over 10,000 steps when you never do that at home due to the pain and fatigue it causes. You will pay for it later on and you don’t want that.

So then we have our second day. Which was the first day of timetabled activities so obviously perfectionistic side of Hannah kicked in. There was no way I could miss that and in my mind I had to do everything. (Which obviously wasn’t true, throughout this entire trip it has been made expressly clear multiple times a day that everyone else would be okay with me resting if I needed to.) But Hannah is Hannah, and although I’d had very minimal sleep due to being in pain (Yay ovarian cyst ruptures and all the walking being hard on my legs) I made it my mission to manage the full day despite not feeling atall well. It wasn’t like I was in a crash or anything.

Lesson 3: REST! Listen to your body. If you had a cyst rupture on your ovary or whatever is causing you to feel bad let your body have at the very least a morning to recover. (Normally give myself atleast a day when I’m not away)

I made it through the day, and even participated in a salsa lesson which I was very much told off for in a “well done but please don’t push yourself too far” way. It was fair to say that once the day was over and we got into the taxi I was well and truly done for. My endometriosis pain was really acting up in a contraction like pain way and once I got back to my room I managed to dislocate my shoulder by writhing in pain. (My pesky shoulders will feature a lot in this post).

And so, from 6pm to 6am, only getting out of bed to take a shower our third day starts. Apparently, I still had a lot of endometriosis pain, which is always fun because max strength prescription co-codomal combined with an overdose of ibuprofen won’t touch that. But we persist, despite being told resting was okay if that’s what I wanted to do. I stayed off of the coffee bcause I think it was coffee that really did me in the day prior. So we stuck with a green juice which did wonders for my endo pain.
The juice in Columbia is all freshly made so it’s incredible!

So you would think, endometriosis pain solved, I would manage the whole day. Well you and I were both wrong. Which was sad as the rest of the group were going up Monseratte which I really wanted to do. But my body had other plans. I was feeling lightheaded, shaky and my heart was doing weird things. I would have tried to power through it if it wasn’t for my brain completely going to the point where I didn’t even feel present in the room we were in. I knew I was having some sort of crash. If I have POTS it can be put down with that as on this occasion I lacked the extreme muscle weakness that tends to come with ME/CFS. So I didn’t even make it until lunch, but after forcing down various forms of electrolyte drinks/powders and eating salty snacks I was back in full force by the next day. (Well as much full force as is possible for me)

Lesson 4: If you have POTS or just have similar issues as a result of another illness keep salty snacks and electrolytes on you because sometimes they do actually help and it will save you from having to get other people to go down to the shop for you when your too unwell to do so yourself.

So it is now our 4th day! And we managed! Maybe we pushed too much considering nausea, and severe pain but at the end of the day, I would rather push myself a little too much than not quite enough. I had to sit down on the pavement whilst waiting for the taxi has my heart rate went crazy high and I knew at this point I had to make it through the rest of the day. In the afternoon we went to a botanical gardens which meant lots of standing and walking on some severely painful legs, which I managed but god knows how. Especially considering I had been told if I needed to sit down I could. (Clearly being given the option to rest doesn’t make me weak and pathetic)

Lesson 5: If your honest about how your feeling you may be surprised by how people try to help/accommodate you.

Now day 5 is what I would call the start of the major crash. (This was definitely ME/CFS) I woke up feeling okay. (Well in my book). But at around 10am It just hit me like a ton of bricks and although I managed to stay for the rest of the lecture and went back at lunch I knew when I was standing in the lift on the way back up to my room that I had really gone and done it. For those of you who don’t have ME, a bad crash is so bad that you can barley lift up a bottle of water and lift up your head to drink said water. It’s having to crawl to get to the loo because you can’t stand up for long enough. Not fun.
But idiot here did things the next afternoon/evening as she was getting to the bored and restless stage of the crash.

Lesson 6: If you have a bad CFS crash don’t rush back into trying to keep up with your able bodied counterparts.

So I spent the weekend and the Monday stuck in bed, barley conscious, barley able to eat or drink due to severe head and face pain as well as muscle weakness and barley able to get myself from my bed to my bathroom.

But I to some extent recovered and was back to managing a full day of things the next day. Although I did collapse in the toilets after lunch. Fortunately I was able to get back up and pretend nothing had happened but it was still slightly terrifying.

Lesson 7: If you collapse/pass out/fall bring your phone with you EVERYWHERE. I was lucky I could get myself up that time but if I couldn’t I would have had to wait for someone to find me because I left my phone in the classroom.

And so Wednesday came, with more endometriosis pain (Think my uterus is slightly jealous that CFS has been getting all the attention.) Again I only managed a half day, but felt dreadful with CFS less than half way through the morning, however it was so much fun that I had to stay. Now obviously I then spent the rest of the day, in bed, in the dark feeling super nauseous, unable to see, with a really bad migraine. But it was worth it!

Lesson 8: sometimes you need to have fun! Even if physically you feel dreadful!

With a lack of better judgement and despite being told to rest I managed to make it through Thursday. This was out second to last day in such a beautiful country and by this point I just needed to have fun and make the most of it rather than look after my health. I slept in all 3 of the hour long taxi journeys that day, and my right ovary started acting up a little more than it had been in the 2 days prior but I managed and it was definitely worth it for the post it notes in the 3M goodie bag. (I’m such a stationary whore) After going back and starting packing, which meant enduring more bad right ovary pain and a subluxed shoulder I even managed to go out and look at some pretty lights for around an hour before crashing in bed till the next morning.

Lesson 9: We’re going to reinforce that sometimes you’ve just gotta have fun message!

So obviously felt awful come our final full day. Endometriosis was definitely jealous at this point seeing as I woke up, unable to move, crying from pain and nausea. Even had to send a message to say I might not be able to make it down because Endo was that jealous. But being me I did and somehow made it through the morning despite being very bitchy and absent as my entire body was hurting so much. There were times when I was asked if I was okay and all I could do was nod or whimper because endometriosis really knows how to get the better of me. Submitted to being taken back to the accommodation just before lunch, was not feeling remotely well enough to endure pain and people for any longer by this point. Layed down, which helped ease my endometriosis pain although nothing else and basically napped for a good 5 hours before going down for our final dinner together.

Lesson 10: Sometimes pain gets the better of us all. Superwoman or not. Giving in does not make you weak. Giving in means your listening to your body, accepting your reality and that requires an incredible amount of strength.

And here we come to our flight home. Which was obviously not smooth sailing because severe pain, endometriosis was definitely threatening a major flare up and still is and it became my mission to make all my flights on time so I could get home before the stabbing vaginal and rectal pains and the burning stabbing bladder pains and all the rest of the taboo joy that comes with endometriosis. It was about the point that I had to stop myself from crying/screaming in pain in the plane toilets over peeing that I realised that this is going to happen at some point. And I did. I made all my planes, dozed for most of it bcause fatigue, had to run more than I’ve ran in atleast a year to make my last flight as due to a delay I had less than an hour to make the connection. But I managed and I’m now home safe and sound. Can’t tolerate having my curtains open and sleeping more than I’m not but happy with how my body is dealing with this because it could be a lot worse!

Lesson 11: Avengers: Infinity war is incredible for pain distraction! Especially if you like fangirling. (couldn’t follow it because brain fog but enjoyed the fangirling.)

Lesson 12: Going to reinforce the wheelchair assistance thing so you don’t have to fight your body to run up escalators when you find walking up steps difficult enough.

Taking a mental health break

So, it’s the summer holidays. I should be getting myself out there, gaining valuable work experience and what not. But am I? No. And not that I haven’t tried. Despite not wanting to be a Lawyer, I have kidded myself enough times that I do and periodically applied for vacations schemes throughout the year. I have scrolled through job sites to try and find summer jobs that I can realistically get to without a car from home home, because I’m not interested in paying for summer halls and then having to work x amount of hours just to break even.

And there is just nothing, that I stand a chance of being physically capable of doing, that meets all of the above criteria and will allow for a 2 week holiday, give or take a few days for me to go to Columbia with my university at the end of July/beginning of August.

But that’s okay. Yes I could do with the money. But it’s okay to be doing nothing with my summer.

As some people might see it, or maybe that’s my perfectionistic over-achieving mindset seeing it like that and actually, no one really cares that I materially lack work experience. Because A) It’s not like I’ve never been employed and B) I have reasons for lacking work experience compared to some of my peers.

So, to make myself feel less bad about this 3 and a half months of rest. I’m calling it a mental health break.

The reality is, even i can push through my physical health issues enough to be reliable and do a good job, the need to be reliable and do a good job and constantly not feeling like I’m good enough would be detrimental to my mental health. It has been in previous employment situations.

The reality is, even if I only worked 16-20 hours a week, I would be worried of doing much outside work incase it made me too ill to do my job. Which would mean neglecting friends, family and the wonderful summer sun. Which would aggravate my depression. I’ve learnt this from doing my degree this year. I had to take EVERYTHING else out of my life and I ended up suicidal, self harming again, falling into a pit of despair, disappointing my family and losing two of my closest friends. I don’t want to be in that position again.

Not only that but I want to be physically strong enough to manage doing everything timetabled for Columbia. Which okay, even with pushing myself to the max, could be an unrealistic goal. But the best chance of me attaining this is to spend the next two months resting and trying to build up my muscle mass through gentle exercise so walking upstairs doesn’t make my legs feel weak anymore. So I can pack more than two items of clothing before my arms start to feel weak. I want to make the most of this wonderful opportunity that I’ve worked hard to get. And there’s nothing wrong with that. Even if I do feel my dad is looking down on me for “wasting money” on going on a trip abroad rather than doing some more useful work experience with my time.

Further along the line, I need to be mentally and physically strong enough to finish my degree. Third year is the toughest and most intense year of a degree there is. The perk, if I get my module requests in on time and have passed my exams, I’ll get to do 4 really exciting modules which I’m really enthusiastic about and looking forward to.

I’m going to admit. I haven’t really been physically or mentally strong enough this year. I’ve had to study from my bed most of the time and I’ve missed more lectures and seminars than I would like to admit. I’ve pushed myself to go in a state in which I know I shouldn’t be attending even more times.

At the end of the day. I’m giving myself my best chances of getting my degree. And okay, maybe in the long term this won’t fare well but that’s okay.

This most recent academic year I haven’t really had a chance to do what I really want to do. And I haven’t really had a chance to relax. Lesson 1, forced rest and relaxation are not the same.  I haven’t had a chance to write fanfiction, use this blog as much as I would like. Indulge in TV, especially new series of things that require following. I haven’t read a book, just for the fun of it since last summer. And not because I’ve been off having the time of my life, I haven’t even been that social this year, because my health has prevented me.

Purely because my foggy brain and fatigue means I need to put way more time into my degree with way less energy to do the degree with. Which is also okay, because I love my degree, if I didn’t love my degree I wouldn’t still be doing it, I definitely wouldn’t have preserved through the past year of it.

So actually, I think I need this time. To just enjoy summer. To find myself again, to think about what I’m doing after my degree. Am I going to run off and do a psychology conversion, followed my a masters in forensic psychology? Am I going to go for the NHS policy and strategy grad scheme? Am I going to go into social work by doing one of the  grad schemes available? Or maybe I’ll try and get my hands on some volunteering with vulnerable people and become a probation officer?

Or maybe neither of these are the path I will take, but that’s okay too. It’s okay to take time out. It’s okay to not know what I’m doing with my life and it’s okay to study law when I don’t want to be a lawyer or become an academic. This is my path in life and eventually, I’ll figure out where this is all going, where it’s all taking me.

Until then it’s time to ride the wave, remember it’s okay for me to be taking such an extended break from life. Because that’s what I need right now. A break. I need no pressure, and time to heal, both mentally and physically.

Finished 2nd year law//A year in review

Wow! First things first, that went quick. It seems like it was only yesterday when I moved into my student house and now I’m packing up and getting ready to go home for the summer, with an exciting trip planned at the end of July.

Thinking of it, it’s been such a good year, despite all the really bad things that have happened. I’ve grown a lot as a person and achieved things I never thought I could. I came into second year knowing it wouldn’t be hard, but not quite realising how much my health would affect me. Now maybe this was naïve of me, considering I’ve been ill since I was 10. But I’ve always for the most part been able to push through pain before. But pain, fatigue and all my other wonderful myriad of symptoms have been bought to a whole new level this year.

I knew it would be tough when after one day of freshers week (No I was not going round acting like a crazy fresher) I was left feeling dreadful. And everyone around me could tell, that façade I normally have, or atleast used to have that covered my illnesses from those around me slipped.

Even then, nothing prepared me for how hard. I was kinda of the perspective of well if I have do do it, it’ll be fine and it’ll get done to the standard I expect of myself.

Boy was I wrong.

Try prepping a seminar when your so fatigued that you can’t read the words on the page, let alone make any sense of them. It doesn’t work. It really doesn’t work. Everything just feels like working through this relentless fog. It’s a constant fight to try and gain some ounce of comprehension over what is going on. Or prepping a seminar when your in so much pain that you can’t even begin to think about anything else, but the excruciating pain that’s going on in whatever part of your body, and if your lucky, your entire body.

Not to mention going to lectures and trying to be an active member of various clubs and society’s. Eventually I had to give in and realise that I was way over doing it and it just wasn’t working.

This came after a 2 week migraine, when I realised things had to give. I had to stop being so involved in various clubs and society’s and just try to keep up with my committee responsibilities if possible. But even then, it seemed not to be. I started the year on two committees, and attending 2 other society’s, I’ve ended the year on one committee and barley attending that society.

It got to Christmas and I realised if I wanted my degree and I wanted to stand any chance of coming out with a 2:1 or a 1:1, that my degree had to be my absolute and No 1 priority. I’m gonna be honest, law has kinda become my life. Especially in the run up to exams. And although on the one hand it has been so bad for my mental health, to not have a life outside my degree. I have finally realised I love law.

Which sounds weird to say. Law degrees are notorious for their difficulty and intensity for anyone, but I do. I love law. Even the dreaded law of trusts has grown on me over the year.

Don’t get me wrong, I’ve had multiple breakdowns, a suicide attempt and I even started self harming again. It’s not all good. But if anything, it’s just made me stronger. Made me start to realise what’s important in life and also made me realise the No 1 thing that destroys my mental health is comparing myself to others. In any way, shape or form I can.

But despite the multiple lectures and seminar’s I’ve missed, I’ve done it. I’ve managed and honestly it feels amazing to have worked so hard for something. Especially when multiple tutors have told you to take a year out and you yourself have nearly dropped out on many occasions.

This year, I’ve learn’t more than just the never ending lists of cases and statutary provisions. I’ve learn’t that I am actually a capable Law student. Something I’ve never actually belived before and I still struggle. But my grades don’t lie. Last year I was only getting 2:2’s in my coursework because my priority was my extra-curriculers. This year I’ve got 2 1:1sts a 2:1 and a 2:2.

Even if I drastically messed up my exams, which considering if I had a CFS diagnosis I would have had extra time. The fact that I finished those exams in themselves is some sort of miracle. The last time in my life an exam was so painful was when I had a cyst rupture on my ovary during a GCSE chemistry exam.

And exams have never been as exhausting, never has it been so difficult to fight through that fog, because normally, any adrenaline will make up for it. It’s just a relief that I did it and I managed.

Now maybe I won’t feel the same when I get the results. Let’s face it I probably won’t because a lot of my perfectionistic mindset has come back since the first 1:1st. But right now, I’m happy. I’m happy because I’ve achieved things I never thought I would. I did my best. I might even go as far as saying I have done more than my best. I have pushed myself beyond so many limits, and I can truly say It has made me stronger.

University with a chronic illness

Having a chronic illness (or many) is hard, there’s no doubt about that. You basically become a full-time patient and very quickly realise you need to become better at advocating for yourself if you want professionals to treat you in the way that you deserve to be treated. Add the workload of a full-time degree course, and the whole social aspect of university then managing this becomes almost impossible. I’m going to share some tips that I’ve gained from my experiences and am trying to start applying to help me through my final 2 years.

  1. Make sure your tutors are aware – this was something I was told to do by a friend. It was something I always knew I had to do, I just kept on putting it off. Probably because of how awkward and pathetic it felt. Especially considering the undiagnosed nature of my conditions back then and because I have endometriosis and the nature of that alone can generate some unwanted responses. But actually, I was shocked by the responses I got showing genuine care and concern. And just letting people know really reduces the stress and pressure. (Serves me right for having no faith in humanity).
  2. If you can barely walk up the stairs without nearly passing out don’t attend your class – I still need to learn this, but once your in that state with fatigue nothing will go in. You’ll be spending your entire class trying to focus on just staying upright and not passing out. Nothing will make any sense and you’ll barely be able to keep up with note-taking. Most lectures are recorded now, it’s much more beneficial to stay at home in bed and go through the recording when you feel able.
  3. Register with your universities disability service – still not done this because I’m not 100% sure I’m officially diagnosed (was told I probably have CFS? Doesn’t sound official.) But do, even if it initially causes stress to get the evidence and such because they can provide you with support throughout your studies.
  4. Stay calm – you are doing the best you can. Maybe that’s not the brilliant first class marks you wish but you are fighting a hard battle no one knows. I promise you, you are doing enough, and being enough, even if you may get behind on or struggle with your work more than you would like.
  5. If you need to take a year out, go part-time, or drop out all together then there is no shame in that – your degree is not the be all and end all future success and a rewarding, enjoyable life. There’s so much more to life than the qualifications you’ve gained and the calibre of the career you hold. There’s love, happiness, travel, family. Even the simple things, like waking up in the morning to see the sun shining, gentle walks in the aforementioned sun.  There’s so much to life that doesn’t depend on your degree and at the end of the day, everyone will agree your health is far more important than an extra qualification.
  6. Your gonna have to miss out on certain social activities and networking activities and that’s okay – Uni is when FOMO his you hard, or the guilt over not committing to your future career as you should be and attending all possible networking events. It’s okay to miss things. It’s okay not to go to the pub regularly or go clubbing. It’s okay to not be heavily involved in clubs and society’s and it’s okay to not attend networking events. Again your health is so much more important. And being sick doesn’t mean you’re destined to having no social life. It just means that you need a quieter social life. The best friends are the ones who understand that.
  7. Take breaks – everyone needs study breaks. The brain can’t focus and absorb information when revising for more than an hour at a time. But this becomes even more important when you’re chronically ill, especially if you face fatigue and brain fog as a result of your illness. Yes, maybe you can “Push through”. But your time is going to be more effective and the information better absorbed if you take regular breaks. So take breaks when you feel the need and don’t feel guilty for needing more breaks than other people.

These are the tips I’ve come up with, if anyone else has others that may be helpful to people in this situation then, please comment and share.

6 weeks of 2nd year

Hello again readers of my blog. Today I am coming to you after 6 weeks of second year. Well six weeks of lectures. 7 if you count freshers week and 8 if you consider the fact that reading week is almost over.

The last 6 weeks have been hard. I started out trying to do it all. climbing, model UN, my two committee responsibilities and of course that all important degree. Swiftly realised trying to do it all wasn’t going to happen. It’s not good for my health. And after a 2 and a half week migraine I’ve learnt I need to start taking it easy and listening to my body. Which means sacrificing things I love to prioritise my health and that all important Law Degree.

It also meant learning to say no because lets face it if I haven’t been able to get out of bed, or even lay in bed and watch TV all day, let alone do any uni work. I shouldn’t be leaving the house to go to something extra curricula. Even if it is one of my committee responsibilities.

Saying no is really hard. Not being able to do what your body should be able to do. Not even being able to push through anymore it really frustrating. Especially if your someone like me who likes being busy. When you physically can’t it hurts and it’s an adjustment process.

Over the last couple of months I’ve pushed myself well beyond what I feel healthy enough to do on a daily basis. I’ve got behind on uni work and somewhat caught up again. And all I can say is I’m proud of myself for what I’ve managed. I’m proud of my strength in dealing with all of this and still committing myself to my uni work 100%. Not using “I’m not really feeling well.” as an excuse to slack off and skip all my lectures or not put the effort I know I can into my seminar preps or coursework assignments because I can’t really be bothered.

At least now I know. I’m doing the best I can and no matter what comes from it, at this time in my life I can’t do any better. Not without sacrificing my health even more than I probably already am.

It’s like being more ill has made be more motivated to do my uni work because feeling too ill to do things a significant amount of time leads to a lot of boredom if you don’t at-least try to push through some of the time.

Over the last few weeks I’ve been pushing for diagnoses. Having blood tests, pelvic ultrasounds and going to physiotherapy appointments. All of which are enough to exhaust me. I’ve also learnt how much love and support I have around me. I couldn’t be more thankful for it. It’s funny actually how much support you get when you start opening up about your issues and trying to be honest about what is going on.

But yes, after the last few weeks I can tell you that anything is possible. Well not anything. You have to choose your priorities, but once you set your heart on something you will manage it. You may just have to take it at a slower pace than others do.

I can tell you that studying full time on a highly demanding course whilst being chronically ill is hard and sometimes it feels impossible. But I can also say that if you want it enough you will get through it, somehow. It may take you 4 years instead of 3. It may mean you can’t indulge in the typical “uni life” as much. But you can do it.

I am going to take that “I can do it.” Forward into the next few months and final year of my degree. Because unless I get so ill that I’m forced to drop out then I can do it.