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 panic is back, along with the hope

So the results of the PIP assessment thankfully arrived much sooner than the actual assessment did but unfortunately they will not be giving me any benefits. This then has some negatives and some positives and as always, some frustrations.


The most frustrating thing is that when I applied, and therefore needed it most, my form was backlogged somewhere, and now that things have improved a little, suddenly I get an assessment! The positive in this is of course that I have improved and while the whole system is in my view a bit ridiculous, it does demonstrate that I have come very far in my recovery to the point where I am not sick enough for PIP.


The problem with conditions like CFS/ME is that where you have to work yourself hard to do things you have to prioritise very severely. I can just about (but with discomfort) manage most everyday necessary tasks for life, like eating and washing. But to have the energy to do all that and then enjoy other things like socialising and hobbies is something many CFS/ME sufferers lack. My hope was that the PIP money and the disabled status that comes with it would enable me to live a little more because I would not have to worry about the parts of life that most people take for granted. I would get a free bus pass for example which would mean that I could get a bus for short distances without worrying about the accumulating bus fares.


The Bible promises us that we can have life and have it to the full, which right now feels a little out of reach. I have to have faith that God really can live up to this promise.


I am also currently freaking out a bit about going back to university. The fear and anxiety is much, much less than last year but it's still there, making all my symptoms worse. This is very inconvenient as I have loads to do before I head back. The end is in sight though. I had been thinking about quitting or going to a different university to go part time but I feel that this is something I need to do. I would liked to have taken a year out previously to recover and sort out appropriate accommodation but I was unable to do this alone and my parents refused to help me achieve this.
I am getting back my big dreams and I know that God has plans for me that he's excited about. I also know that I would not have gotten through this without God and the promises he has given to me, and everyone who believes in him.

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.