"The Lord he knows where each day goes, I know he won't leave me behind"

The last couple of weeks have been an almost uneventful few days, and that is just how I like it. Exciting things have been happening but they have been interspersed with calm and relaxing days.


One thing I would like to write about is a visit to the CFS/ME clinic at Sutton Hospital about a week ago. This appointment was a follow-on from the seminar I went to a few months ago. I met with a specialist physiotherapist to discuss my resting regime (my phrase, not her's) and anything I might want help with. I went in thinking that I was doing OK I suppose as I have been improving steadily since Christmas and have been feeling a lot more hopeful for the future, but on the other hand I still have days when I get the resting regime a little wrong or I feel much less persevering and overall I can't live as a normal 20 year old quite yet. So I was very surprised when the physio said that I was doing really well and doing everything right.


Really??


Apparently yes. Maybe it's my perception that being as I'm not better yet, or that I still have down days so I have to be doing something wrong. Or maybe it's other people's perceptions that my illness is my fault, or that my down days are my fault. Either way, somehow I was surprised. This is something that has reassured me though as most of my resting regime is of my own creation based on trial and error, not the specialist advice of a doctor.




I may just pause here and elaborate on what the physio said was particularly good/helpful:

• pre-resting (again, my phrase not her's) which involves resting in anticipation of larger energy expenditures rather than relying on resting afterwards. Somehow it's more efficient, but I'm not sure why. Maybe because you feel a little less anxious going into things knowing you have prepared??
• proper resting. I talked about this about a year ago as I was experimenting with it but haven't kept it up so much. The physio described proper resting as simply doing nothing, even for only a minute or two. I had gotten a little into the habit of watching TV to relax but it doesn't quite work as well.
• a good bed-time routine.

This is turning out to be a meandering post because I would also like to put into words my thoughts about this, my last long summer before I am meant to go out into the real world once I graduate next year. Last summer felt wasted as I spent most of it in bed feeling very poorly but this summer has allowed me some freedom. While I still cannot compare myself to others at my age and stage in life without some sadness and envy, I can still enjoy the great things my life is offering to me right now. I am well enough now to meet up with friends I haven't seen for a while and so have something to look forward to. The most encouraging thing is when friends who I have barely seen are still good enough to remember me. They tell me that they are so glad I have made it to see them or to get to an event and make the most of my company, which is the most lovely thing ever. So somehow I don't feel this summer is being wasted, and I am learning to enjoy each day for its own sake.

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.

"Your grace finds me"

If you hadn't noticed already, I have found some parts of my life hard since becoming sick. However I have also discovered God's amazing power for comforting and bringing joy to those who need it. I read recently a part of the Bible in 1 Kings chapter 19 where Elijah (a famous, and rightly so, prophet in the old testament) fears for his life as he has greatly angered a very influential person in his country while obeying God's instructions and fears for his life and wellbeing. At this point Elijah wants to give up everything. The Message (a version of the Bible) describes it as "wanting in the worst way to be done with it all". He really is at a low point.


And so Elijah prays and asks God to take his life. God answers his prayer - but not directly, as with most answers to prayer - and gives him 4 things: food, rest, encouragement and someone to help him. It appears to be exactly what Elijah needs as he shortly afterwards stands up to the influential person who has been angered despite her power to have him killed or beaten and conveys what God has in store for both her and her husband. It's not pretty (it involves them falling off high buildings and lots of blood).


I found this so encouraging as there are times when I have prayed for particular things and not seen them happen in quite the way I expect because God knows us and knows that sometimes what we need are more basic things. God didn't do as Elijah asked nor did he immediately solve Elijah's problem. He instead sees Elijah is discouraged and equips him with exactly what he needs to face the situation. I also think those 4 things that God gives Elijah are so applicable to every bad situation we face.


In this way the more difficult times in my life have led me to be able to get something from passages such as these and to really understand some of the mysteries of Christian life. I also think that you cannot truly understand questions like 'why does God allow suffering?' unless you have been through suffering with God alongside. At church last Sunday someone mentioned a talk they had been in recently where the speaker had mentioned that life is about balance and that with good things also comes bad things, and conversely that with bad things come good things.

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.

"If you love me let me go back to that bar in Tokyo...

...where the demons from my past leave me in peace."


I have recently had a slight TV binge of the 'My Mad Fat Diary' boxset on 4od. For those who haven't seen it, it's about a teenager with mental health problems trying to navigate her way through the tangled mess that is adolescence. For something with such a flippant title, it is very moving and in some cases inspiring. The main character does not hesitate before starting new friendships and relationships, even though her illness will probably create difficulties. She constantly does things that terrify her, things that others do without thinking. And at the same time there is so much to relate to in the programme that it has left me changing my perceptions for days after I finished watching the last episode. Here are some of the things that have left me thinking and that I have been challenged about.


The perception that nothing has improved because today is a hard day.
This is a very easy one to think without even realising. It is the small moments of normality that make me realise that I have come so very far, both in terms of my health and how I perceive the world. I used to be so ill that I was in pain every minute just with the effort of existing but now I can walk and laugh and enjoy life in a way I wasn't able to this time last year. One day of feeling a bit rotten can be easily attributed to something like the heat of summer, but is all to easily attributed to a downward path. This has reminded me that thinking backwards to a more negative past can highlights the positivity of the present.




The perception that a friend's support is only what is visible to me.
This is where the demons from my past comes in.
Support comes in many forms, and a person does not have to be perfect to be a good friend. I have been let down throughout life in many ways, by many people, and to varying degrees, which has given me the warped perception of betrayal at every turn because you can see it anywhere if you really try.
A friend's support can occur in private, can happen with others when you aren't around, and with you in person. People have sometimes get the last one wrong, due to maybe a lack of knowledge of my illness, or perhaps my inability to speak openly about what I'm struggling with. It takes a lot of trust on my part to believe that the support is still there in other ways. The panic that comes hand in hand with sickness does not usually allow room for such trust, but is something I will need to work on.


The perception that people are scared of talking about illness.
I have met so many times with people who look awkward when I start talking about having CFS/ME, but this has been challenged by the observation that people view a person's illness in the same way the person themself does. If someone is able to live with their illness and work with it, this encourages a positive attitude from other people.


The perception that others see you as weak for struggling.
Maybe this is more my perception of myself. I have found in the last few years that you are what you eat and 'man cannot live by bread alone, but by every word that comes from God". Having negativity in your life and being surrounded by negative things is likely to lead to a negative outlook on life. Getting by and being positive despite such a negative thing as a chronic illness is hard work and not something that comes easily to me. My ambition therefore is to become a master of the art of positive thinking. I used to think this was something negative people were told when others were bored of their negativity and feels like a cop-out as it is something the person must do by themselves and without the help of the person suggesting it. But this perception has changed; surrounding myself with positive things and encouraging positive thoughts will help immeasurably. It's not going to cure me but it will make living with sickness a little bit easier. I hope. "I'm sick of dancing with the beast."

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.

CFS/ME awareness day 2014

Today (12th May) marks the annual CFS/ME awareness day worldwide. The more I meet both people with CFS/ME and those who know them, the more I feel so strongly that this disease needs a much greater awareness. So many people have this illness, young and old that you probably know at least one person with it, and yet so many people are ignorant of it and its lasting effects on both those who suffer from it and their friends and family.


This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.




I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.


When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.


Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.


In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.


I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers.  I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.


I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.