The cycle and the end.

This blog has been very helpful to me during the worst times of my illness. It has been there when I was feeling like my life was going nowhere and when the ignorance of others (particularly the medical profession) has been overwhelming. While I am not cured I am a great deal better and am nearing the end of my degree which means that maybe it is time to say goodbye to my blog. I may one day need to return to Real Life Sisyphus to help me get through new life challenges created by having a chronic illness but for now I feel the need to call time on this blog. I hope that it has helped others understand the life of those with CFS/ME or help sufferers understand their illness better. Very little information is out there and the honesty of other blogs has helped me very much to understand where I stood and how to manage my symptoms.


I would like to end on a cycle that I have realised as a result of a lecture recently on chronic pain (in the context of a clinical psychology module).


It appears that chronic pain is viewed in a similar way to chronic fatigue by the medical profession. Chronic pain is generally considered to be pain that is long lasting but without the presence of anything that actually causes pain. While the causes of physical pain are complex and very little is understood, generally the view is that chronic pain is caused by a person being afraid of using a particular muscle or joint because they fear the consequent pain - which in turn leads to the muscle or joint stiffening and becoming painful. Psychologists believe this leads to a vicious cycle in which the patient doesn't use their painful muscle or joint because they think it will hurt, causing it to hurt, causing them to not use it and so on.


I know very little about this cycle, definitely not enough to comment on how accurate it is but I do know two things. The first is that if you look at research into treatments for chronic pain based on this theory, they generally don't work. The second is that this sounds remarkably similar to the medical profession's views on chronic fatigue: fatigue is caused by not exercising due to the fear of exercising, not exercising leads to muscle atrophy and fatigue, fatigue leads to not exercising and so on. I know this second view to be rubbish, partly because treatments for fatigue based on this paradigm also don't work, and partly because I have attempted to push through my fatigue before (believing it myself to be simply muscle atrophy and laziness) which made my illness much worse.


This perspective of the medical profession leads to the belief that CFS/ME sufferers have 'untrue' and 'unhelpful' beliefs concerning their fatigue such as 'All doctors are arrogant/lazy (insert your favourite adjective here!)', 'I feel horrible so something must be really wrong', 'Doctors should work to cure me because I am sick'. Personally I think all of those, maybe I am crazy really.


But on the other hand, if doctors have this perspective they will talk to patients in a way that actually encourages these thoughts in some cases. I have had doctors not talk straight with me about my symptoms regularly which confirms the first belief for example. Where doctors believe that you are almost making it all up, they are naturally going to talk to you in a condescending way and not take you entirely seriously, despite their best efforts to appear sincere. This behaviour then causes the "untrue" and "unhelpful" beliefs, confirming the doctor's perspective of the patient. So maybe I'm not crazy? Maybe my "unhelpful" beliefs are the result of my doctor, not my illness?? My cynicism of doctors is definitely something that has developed very recently and way after my illness started.


Having said the above, I have met the odd very helpful and straight-talking doctors and medical professionals:
- my physiotherapist at my university doctors surgery, who helped me with pacing and not letting my illness hold me back
- Dr. Bansal at the Epsom and St. Helier hospital
- the CFS/ME team at Sutton Hospital
- the lovely nurses at my university doctors surgery, who have given me my B12 injections with little fuss and pain.


Thanks to all of the above, as well as the many friends and family members who have supported me during my worst times, despite many attempts to push them away through letting out my frustrations and fear. You are all amazing.

First times

It's been quite a while since I last posted. Where posting on here helped to let out some of my anxieties and fears I have had fewer, and so less need for posting. I am about 10 weeks into my first term of third year now and despite the work being more challenging and the essays being longer and more detailed, I am generally enjoying things and managing my symptoms well.


The relief to finally be simultaneously ill and a student without the one massively impacting the other is huge. I have had a few stressful weeks with my coursework essays though where I underestimated the amount of work needed for the first and then the other two going down like dominoes. I'm still a bit rough because of it but I am grateful that I only feel a bit rough every week or so as opposed to every minute of every day. Mostly anyway!


I also had a panic where I had applied for an extension for one of the courseworks and it was turned down, which had never happened before. Fortunately a meeting with the support office finally shed some light on the situation and what things could be offered to help me when I am struggling to get my work done.


So overall a much more positive time, for now! I am exhausted and can't wait until Christmas but where my only stresses are study related and where I love what I'm studying generally things are OK. I live in a beautiful building and I have lots of neighbours, all of whom are lovely. I have all my meals made for me in a canteen and all my lectures and the bus stop are within 5 minute's walk.


Thoughts of what next year will hold are a little scary though. As a third year my inbox is full of messages that are career related. Currently I really don't want to think about it but I also don't feel there is any rush and that I can take my time when I graduate to find the right job for me.

The big day is almost here

After almost a year, I have finally received a letter from ATOS giving me an assessment date. ATOS is the company the government decided was capable of assessing who needed financial support to help them live normal lives with a disability. There are two disability benefits PIP (Personal Independence Payment) and ESA (Employment and Support Allowance). PIP (not to be mistaken for PPI) is a benefit for anyone with a disability to help with the cost of carers and getting around. It replaced DLA just over a year ago. ESA is for anyone with a disability who is unable to work due to their disability.


Sounds straightforward enough. But how do you assess whether someone is eligible for such benefits? As a student, I can't get ESA anyway as Student Finance covers enough and I'm not out in the big wide world just yet, but just what criteria would you use to define a person as unable to get a job? And if they were capable of maybe getting some certain types of jobs, would there be enough available for them to be hired anyway? Similar questions apply to PIP and I have talked (or moaned rather) about this already on this blog).


It seems ATOS' criteria basically includes any person who is living. Maybe a slight exaggeration but it does seem to be the only consistent criterion. I have heard from many people with severe CFS/ME who are bedbound and are in agony at the sensation of any light, sound or touch, who have had to have their assessment from their bed classed as capable of getting a job. Thankfully ATOS is ending their contract early and very soon will no longer be conducting assessments. In the meantime I have an assessment with them. As someone who can live and breathe I probably won't get any benefits so that's at least 2-3 hours of my day in which I could be resting or doing something productive  instead humouring a person with a series of tick-boxes. If you hadn't noticed, I'm very much a cynic. The world is starting to prove me wrong on these things, but it's taking its time.




Alongside this, I have been decluttering in what I call Operation Room Renovation. This has been taking a while as I have limited energy, concentration and ability to stop being sentimentally attached to every item. The Bible talks about living as simply as possible as humans tend to fill their minds with belongings as opposed to God, and even the ancient Romans believed in living simply (well some of them anyway, such as Horace). My concentration is so bad that hopefully removing some of the items that take it up may leave some room for the things that matter. Currently my absent-mindedness is showing itself in the number of glasses of water I have filled, left somewhere and then forgotten about. There is usually at least 3 in the house somewhere at one time...

The Fundamental Attribution Error

Some psychology student somewhere will google this title and be a little confused as to what's it's doing here. I suppose most other people may be confused too.


As a psychology student, one of the many (many, many) things I have learnt about this last year is the fundamental attribution error. Generally, this is the belief (often made erroneously) that a person's behaviour is due to their own opinions and motivations.


For example, there was a psychology study in which participants were asked to listen to two opposing speeches. Both of the people giving the speeches were given a particular topic to speak on that was controversial and didn't necessarily fit with their viewpoint. Despite the participants being told that the speech topic had nothing to do with the speaker's views, they still attributed the opinions in the speech to the person speaking. So the speaker talking about how battery farming was great was viewed as being someone who supported battery farming, despite always buying free range.


This can also apply to everyday things, such as assuming that a sharp reply from someone is because they dislike you maybe, or have little patience. Usually, this isn't the case (hence F. A. error). I'm not sure why people see others like this but it has some negative consequences when people see the behaviour of those with invisible illnesses.


If I was chatting with a friend and then had to say that I was sorry but I needed to go rest, this could very easily be perceived as me being bored with the conversation rather than me being exhausted and having to drag myself away. And it often is perceived that way. Unfortunately in my world, and in the world of many others with invisible illnesses, can't and won't are entirely different. People who have had activities taken away from them due to illness generally would LOVE to keep doing them. Even doctors sometimes get this one wrong and see the patient's describing being unable to do things as not wanting to do things and diagnose it as depression.


Our brains would like to fit things into neat boxes and so will attempt to make the fundamental attribution error, but you don't have to listen.

The HMS Founders

My parents and I went back to the house I was living in for the last academic year to pick up the last of my stuff and hand my key back to the estate agent. I could talk for a while about the laughable filing system at the estate agent which consisted of a few cardboard files in a heap in the corner, but there was much more excitement to be written about. My mother in particular was keen to see where I will be living next year. I knew the building and room number but had never ventured into that part of the building.


My university has many mismatched buildings on a small campus on the outskirts of a small town. Some of the building feel a little decrepit and smell funny but I love it all just the same. However the pride and joy of the university is their original building that is built in the gothic style and is called the Founders Building. It is massive and orange (my first sentiments when I saw it for the first time) and has two grassed quads. It is also very like Hogwarts in that there are gargoyles everywhere and turrets and it's so easy to get lost you would be forgiven for thinking that the stairs moved or disappeared when you weren't looking.


This building contains offices, the GPs surgery and a library amongst many things, but it also contains accommodation for students who are willing to share a bathroom. It is in this building that I will be living next year and so I have been proudly telling anyone who will listen that I will be living in a castle next year. Most look pretty sceptical.


It happened to be an open day on yesterday too and so my mother's forwardness paid off and one of the very kind student ambassadors took us up to see my room, even allowing me to go inside despite my lease not having started. It was a little like entering a ship's cabin as the room was on two levels and had porthole-like windows. I don't think I have really seen a room like it. Unlike my room in halls in first year which was bare and white, this room had character despite having only basic furniture. It had hidden cupboards that you wouldn't notice immediately and a sloping roof (thankfully I'm only five foot tall!). We couldn't see out of the windows without standing on the bed but our guide told us she was staying in a similar room and could see for a surprisingly long distance. It felt like there were new things to be explored in this great room come September.


I could talk about this room for ages but the main reason it has appeared on my blog is because it has made me excited again about university. University is supposed to be exciting and interesting but it has previously been very much a drag a lot of the time. This room and everything that comes with it promises to make my last year much more enjoyable.

The CFS/ME student survival guide!

So here I am at the end of second year and I am exhausted! This generally means I feel pretty negative but I can look back to this time last year and see how much I have improved and learned. When I relapsed last year I could really have done with some encouraging words regarding being a student alongside having CFS/ME. I wasn't expecting anyone to say it was easy, but even to read about someone who had succeeded was rare. So this is my attempt to rectify this! My disclaimer is both that I haven't quite finished yet, and that I do not have all the answers.




1. It isn't easy, but it is possible!
There are many challenges that come with being student and many challenges that come with having CFS/ME. But I do want to assure people that it is actually possible to do both. University staff are generally pretty supportive of those with disabilities from experience.




2. Do your research concerning practical and financial help
I am speaking from Britain here and so these things may be different abroad. Here are a few of the things I researched.


2.a Disabled Student's Allowance - once you have a diagnosis this is extremely useful. I found the assessor to be very helpful and understanding. Things that particularly helped me this past year include help towards paying for taxis to and from lectures and exams, a printer, a supportive office chair, a mentor and computer software that read aloud PDFs when my brain was too tired to read. I also had a voice recorder for lectures which took the pressure off.


2.b Social Services - they weren't particularly helpful in my case but still worth investigating.
Personal Independence Payment - a benefit (that appears to be in upheaval a little at the moment) that helps towards mobility costs and personal care costs. Also not helpful in my case but also worth investigating.


2.c The university's support office - the people here were very supportive and helpful. They knew more about the help available to those with disabilities and were willing to listen if I was struggling with anything. I would suggest meeting the staff here if you are looking round a university on an open day.


2.d Special exam arrangements - personally I have been allowed 20 mins extra time per hour and this year I was allowed a computer to type my answers on should I wished. The extra time rooms are more relaxed than the larger rooms and no-one stares if you get up and move around. I was allowed a comfy chair or sofa so I could use the extra time as rest breaks.


2.e Coursework extensions - my university weren't too keen on these but worth getting if you are having a bad few days.


2.f Extenuating circumstances - my university had a form I could fill in at the end of each year listing all my courseworks and exams so that the exam board could take my illness into consideration. I assume these are pretty consistent across universities.


I have found my university to be pretty supportive generally. There may be other things I have missed but I think this is everything.




3. Be realistic and prioritise
This is of course easier said than done but is an invaluable skill. I realised that while my degree came above most other things I had to also prioritise basically looking after myself and occasionally my social life to stop myself going crazy. It depends exactly what you're looking for in your time at university. I would suggest that nights out are probably not the best idea! Some students do actually prefer a night in with a film, and being as my university is one of the quieter ones I found quite a few people like this.




4. Your social life isn't going to match what is on the brochure!
Like I just said, nights out partying aren't the best idea. The expectation generally includes partying and drinking but it is possible to enjoy yourself and not do these things. There are loads of things on on campus that include sitting down like plays and small-scale concerts so that you can support friends, get out and not exert yourself too much. You may be fortunate to get friends who are understanding of the CFS/ME and you may not. But never exert yourself too far just to fit in with someone who is pushing you too far out of ignorance.

5. Think about the best place to live
For my third year I have chosen to live in halls on campus in a catered accommodation. Some may choose to live in self-catered as this allows better for special diets but also involves the stress of cooking and shopping. Living at home with the support of parents may be the better option if commuting in is possible. Also look into supermarket grocery delivery if you live in self-catered halls or are in private rented accommodation.

Who is Sisyphus?

I realise that I have never really explained why this blog is called 'Real life Sisyphus'.


I have always been interested in the ancient Romans and Greeks, particularly ancient Romans. Their time period was filled with hedonistic and awful behaviour, but then the same could be said for today's world too. Apart from its downsides though it's a time period that is in a lot of ways totally different and a lot of ways totally similar to today. People at that time appeared to greatly value knowledge and the pursuit of it. They had people who would spend their time simply gaining as much knowledge as they could. I suppose the existence of slaves means that they would actually have time for such a thing but then again, as a student this is basically how I spend my time too.


Their culture is full of myths and legends, which contain both mythical 'explanations' for how various aspects of nature came about and heroes that everyday people could aspire to. Sisyphus probably comes under neither category, where his story serves to teach a lesson, similar to the fables of today. Sisyphus as a character is referenced in a number of ancient Greek literature as a king who lied too much. His punishment from the gods was to have the task of rolling a huge boulder up a steep hill, where this boulder would never stay at the top of the hill and would instead keep falling down again. Sisyphus was then cursed with the task of struggling with this huge boulder every single day of eternity. They don't really do light punishments in ancient Greek literature, and you could debate as to how truly good those giving the punishments were, but that is the fun of studying the literature.


And so this is why Sisyphus' ordeal reminded me of CFS/ME - a daily struggle that is immense in size. It's a little pessimistic I suppose but this blog is aimed to help people understand more about this illness and many people who are ill will not let on quite how horrible they are feeling as they feel that continually reminding people that yes they are STILL ill bores and annoys people. So please excuse the pessimism, it's for a purpose.