The CFS/ME mythbuster!

There comes a time when you meet someone new when you find that they need to know that you have CFS/ME. The time that this is appropriate is not one that can be standardised. However, when that time comes there are a few frequently asked questions that I have found require a quick and effective answer. Here are a few. I hope that this may help people who both find explaining it difficult and those who find understanding it difficult.


So... what is it?
M.E. or C.F.S. (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) is a neurological condition. I like to describe it in two ways.
The first is that my muscles don't behave in the normal healthy way. By this I mean that the way your body reacts usually when you exercise (such as a good feeling after exercise, the building up of stamina etc.) don't happen. Instead I feel really sick after exercise and I can't build up stamina. I can do the same gentle exercise every day and it get harder rather than easier.
The second is that my body overreacts to everything (it's a bit of a diva!). This includes exercise, but also stress, certain food, getting too hot or cold, anything really. Personally I don't eat dairy and I explain that this is the reason why - before I developed CFS/ME I could eat dairy more or less OK.
This doesn't encompass everything though, some symptoms such as dizziness, concentration problems and memory problems are not included really.


So to summarise:
- It's a neurological condition (caused by the nervous system)
- My muscles don't respond the right way to exercise of any kind or intensity
- My body overreacts to minor stressors that would normally be dealt with without you noticing.


How long have you had it?
Obviously this varies from person to person but in my case it has not been the same severity over time. I don't know if people assume it's the same all the time?


I say I have had CFS/ME for 5 1/2 years now on and off, but I was only diagnosed last year. I do have good days and bad days though and say if that particular day is good or bad.


Can you treat it?
There is no standard treatment and some treatments work well in some people and not in others.


I personally am given vitamin B12 injections to help with the dizziness, fatigue and concentration as well as antihistamines to make me drowsy at bed time.


Some people also take food supplements such as CoEnzyme Q10.


The best way to manage it is to pace myself and to balance work and social time with rest. The best form of rest is lying down in bed doing nothing so sitting in a chair is tiring.


How is it diagnosed? How do you know you have CFS/ME and not something else, or am just tired like everyone else?
Unfortunately there is no specific test that shows you have CFS/ME. Instead there are symptom criteria that you have to meet in order to get a diagnosis. It is also a diagnosis of exclusion in that doctors have to make sure you don't have another illness that has similar symptoms, such as lupus, anaemia or thyroid problems.


I know that I have CFS/ME because I fit the criteria exactly. I know this is not usual tiredness because I was healthy beforehand and I know what it is to be exhausted in the usual way! My instinct is to push through (although I may moan about it while pushing through!) but I tried that since being ill and it made things much much worse rather than better. How my body feels and reacts to things is like nothing I have ever experienced before. I do not feel tired most of the time as I can't physically do enough to get tired. That is why I try to describe it as my muscles not working as that is the closest sensation I can think of.


At worst, any muscle use hurts very much, even moving my eyes or fingers.


Are you sure this isn't something else? Maybe you have depression?
I have come to realise that maybe CFS/ME can present itself in a way that looks like depression to others but it is definitely very different.


In depression, the motivation to get up and move and to get involved in things is gone.
In CFS/ME the motivation is very much there but the body physically can't do it.


In depression things that you used to enjoy have less or no enjoyment than before.
In CFS/ME you often can't do the things you enjoyed. You would still enjoy them if you could actually do them! Although sometimes the enjoyment is reduced because of the frustration or the physical pain of doing them.


In depression you spend a lot of time alone in bed because your motivation to get up is lacking.
In CFS/ME you spend a lot of time alone in bed because you are too weak to leave or because doing so helps you manage your symptoms.


Maybe you're just unfit. Come out for a walk with me, that will make you feel better.
Apart from this being a highly annoying and frustrating thing to say to someone with CFS/ME... as previously said the muscles can't function well enough to gain stamina through exercise. However this is the view of some doctors - that patients are just unfit and so scared to exercise because of the negative results of exercising with no muscle stamina.


I can say from personal experience this is not true. When I relapsed in first year I thought that I must just be unfit and so attempted to build up my fitness through gentle walking, by pushing through when I didn't feel like exercising. All this achieved was to greatly increase my suffering. Also, I relapsed pretty much overnight (I assume I had pushed my body just that little too far and it gave up). The day before I had been running around perfectly fine.


Is it contagious?
No. It has been linked to a virus, but from what I have researched this seems to be due to the body's overreaction to the virus or something along those lines. There is no way of transmitting it from person to person. Any genetic link is yet to be investigated though.


Would energy drinks or coffee help?
Unfortunately no, I have tried. All they achieve is a massively high heart rate!


There, I hope I have busted some myths about CFS/ME!!

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.

My life is more than tick-boxes

So ATOS assessment day is tomorrow. Currently I'm in bed listening to the How To Train Your Dragon 2 soundtrack (which somehow has a calming effect, and is pretty brilliant) as even thinking about it is making me want to give up and live in a hole. According to the many people who have been through the process and a number of ex-assessors the assessment aims to catch you out with the mentality of guilty until proven innocent. This is making me nervous, partly because I have an invisible illness that fluctuates and can't be seen, and partly because it's making me think of all the things I can't do in my life so that I can give the best (or rather worst) picture to the assessor. My mother woke me this morning with a lovely long list of reasons why my life is rubbish compared to most 20-year-olds. My positive-thinking ambitions are struggling to substantiate themselves right now. Cake has helped though.


I'm not normally one for going on about people doing extraordinary things despite illness or disability because it makes the others look weak and leaves room for ignorance and judgement, but this situation goes the entire opposite direction by actively searching for the limits of the disabled and chronically ill. I can see the difficulties of such a task in that there are always going to be people who lie or exaggerate but the other side of the coin is the systematic putting down of thousands of people who have way too much to be put down about already.






I wrote this the day before my assessment but didn't post it because it broke my rules about when best not to post. I am glad to say now that while the whole thing was stressful it was a much better experience than I expected.
The assessor told me she had some knowledge of CFS/ME which was reassuring from the outset and was kind enough to empathise with me once the assessment was officially over saying 'it is so hard' and also slightly surprised me by saying how draining it was for her to be a part of the process. While the form is a one-size-fits-all that in reality fits nobody there was some humanity in the assessor which really helped.




For anyone due to have an ATOS assessment for PIP soon here is a summary of what happened in my case:

• ATOS had rented a room in an office building and so shared the building with lots of other companies.
• I didn't have to climb any stairs but the distance to the assessment room itself was a hike.
• The assessor got us settled and then announced that she was ready to start the assessment and waited for me to say I was too before starting. Whether she took anything I said or did beforehand into account I don't know.
• I was prompted at the start to say as much as possible saying 'the more I know the better picture I can put on my form'.
• She asked objective questions from the form (e.g. how far can you walk? can you make a journey independently?) but also prompted me so that I was specific and only talked about my bad days.
• The questions were fair although difficult in some cases because some of them referred to my cognitive ability, which is dependent on my fatigue at the time and is worsened by moving around, whereas the ability to move around was only one specific question referring to walking.
• She asked at the end if I had anything I wanted to add. I suppose here you could include things you feel are necessary that they don't cover in the form (e.g. laundry)
• The end of the assessment was clearly stated and while again she may have observed my behaviour after, she did move away from the computer and talked in a more chatty and informal manner.
• It did feel a little pointless in that the questions were very similar to the form I'd filled in and so really there was little to add but maybe ATOS like an objective assessor.

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 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.

Balancing act

I wrote a blog post on pacing almost a year ago now but a lot has changed in that time. In my previous post I described some days where I couldn't even sit upright, which was a little shocking to me as it was long enough ago that I have forgotten exactly how bad I used to feel. So I am also rather encouraged to have it in writing that I have come so far. It would appear that the pacing, amongst other things, has made a big impact.


Pacing is individual to everyone and so giving a guide for anyone who needs some advice would be difficult. Each person has different commitments. But here are some of my rules that I have learnt to live by, and have become almost natural to me now.


Know the warning signs. Having been ill for a while now I have gotten a better idea of the order in which symptoms appear. This may sound bizarre as they often just feel like always being there in a big rush but once you have gotten to a point where you have a little energy you realise which symptoms disappear first. For me, a sore throat and dizziness are signs that I need a little more rest that day. By the time I feel nauseous and am in pain I have way overdone it. I have talked to others who say the opposite though so maybe their individual to each person.


Plan ahead. Someone suggested to me that pre-resting (i.e. resting before activity) is better than post-resting and I think I would probably say that it is true, for me at least. If you know you have a big energy expenditure coming up, rest beforehand.


Wherever possible, sit down. Sounds a bit obvious I suppose but this was something I had to train myself to do. Sit down at every opportunity. Even on the bus when it's busy and everyone's glaring at you because you look young and fit, what do they know.


It's only 3 things but they are things that do involve some self awareness and changing of your mind set. But it is possible and every little part of energy that can be spared is useful.








God tells us to look after our bodies as they house the Holy Spirit and so I felt a bit liked I'd failed in this somehow as my body felt like it had been used past it's shelf life. But after a bit of thought, I know see resting and looking after my body as following this instruction. I would love to be getting really involved with church and evangelism but instead I will have to honour God by looking after myself, which is the best I can do with what I  have been given. I have also been encouraged recently by a verse from 2 Corinthians which says


"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves."


I definitely feel like a fragile clay jar and it reassures me to know that this does not mean that I can't go out and be God's ambassador because God is so much greater than I am and yet He lives in me in the form of the Holy Spirit who shines though. Also, God says that we have great power from him and so I don't have to rely on my own very limited strength.


Also, sometimes I feel that people assume that I am giving in to the CFS/ME or giving up and moping around by resting. I feel like I should not have to justify my actions (and this feeling may not even be accurate of others' opinions) but resting is the opposite of giving up. It is me managing my symptoms myself in the absence of medicine or physiotherapy. It is me taking control of my life again and accepting facts about my life that are unpleasant. In not resting, I deny and run away from the truth and in the process my body becomes weaker. Resting is a brave thing to do.

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.

Jupiter

I wondered slowly into the room unsure if this part of the hospital really was the place I had travelled 40 miles to be. The whole building looked as if it had been forgotten, which I suppose was appropriate considering many of the patients in it felt the same. The room was filled with chairs, half of which were filled with nervous and expectant people. Some hobble in as if they are young people trapped inside an old person's body while some walk in normally but warily. One woman wears sunglasses and some lean against the wall.
Three women stood at the front of the room and as a natural hush fell on the people in it, one of the women introduced themselves. After further introductions and housekeeping two disappear to the back of the room and the third begins to describe a complex biological system. Everyone listens with interest, some also with wariness as she talks about each section of an ever-increasing diagram. The pens run out as she scribbles in unreadable handwriting on a whiteboard. Then comes the turn of the second woman. She is a clinical psychologist and starts her section by asking those in the room what they have to deal with on a daily basis.
The people in the room, previously supressed by uncertainty suddenly come to life and symptoms and cares are flying across the room. This is the start.






So today I went to a 'First Steps Seminar for CFS' at Sutton Hospital, marking the fifth hospital visit this year. I had no idea to expect from such a seminar and was sceptical as to its usefulness for someone like me who has had CFS/ME for almost 5 years now. As it was, it proved to be very reassuring and informative. The team came across as having integrity, care and understanding. No politicians' talk from them. One of the team described their thoughts on how CFS/ME exists and is caused. This part was new to me and so was of the greatest interest (but also because I have an interest in biology, and of course psychology). It made so much sense, and to have a biological explanation for my symptoms was reassuring because CFS/ME is often supposed to be a psychological illness. Generally, it came down to how the body reacted to stress hormones and dysregulations all over the place.


Secondly we went through common symptoms and emotions that come up in CFS/ME sufferers. The patients in the room called out symptoms as they occurred and there were many nods and sounds of agreement from the rest. The symptoms of CFS/ME are so broad, varied and confusing that it is easy to be overwhelmed by them and to wonder exactly what symptom means what. Seeing each symptom and each emotion that have taken over my life appear one by one on the whiteboard was amazing as the people around me were going through exactly the same. Not one disbelieving face was present.


This was also where the patients came to life. Each were fairly outspoken and each quite obviously had some sense of frustration - at how the medical system had previously treated them, at the lack of practical help, and the everyday struggles for some kind of existence. One person sitting behind me mentioned he had been ill for 10 years and yet here he was at a 'First Steps Seminar' at this point due to his symptoms being ignored and discarded by the medical profession. Others appeared to be newly diagnosed and in a state of panic. I remember vividly being in their place this time last year and it gave me some hope that I had gone through that phase and worked some things out for myself. I still wouldn't say I'm doing well but I have come a very long way.


This post is about me discussing a more positive experience, and although the team will probably not see this post I would still like to praise their handling of the seminar and the obvious hope they have given to a handful of people just like me. My criticism here is not of the seminar or the team whatsoever, but of the system generally. You have to have symptoms for at least 4 months before a diagnosis can be given and so that it 4 months of real struggle before any help can even begin to go your way. Some people like me and the man behind me have waited years for help. Everyone in the room was dissatisfied, anxious and frustrated. The CFS/ME itself is only half the battle.






And I have named this post Jupiter as this is what was playing on the radio as well travelled home from another hospital appointment yesterday. It's a famous classical music piece by Holst, and is entitled 'Jupiter, bringer of Jollity' so I thought it was appropriate.

Turning point

I haven't written on this blog for quite a while now. This is because it was pointed out to me that some of what I had written was inappropriate and hurtful. I have since deleted the particular posts (although if I have missed any, then sorry) and have said to myself that should I return to the blog that it would take a turn back to the purpose it was intended for - to educate and inform people what it is like to have CFS/ME - and not to be the place I turned to let out my feelings when at my worst. Some people have suggested I step away from the blog, but others have suggested I keep writing and I have thought about this a lot. I have decided to return, but to set a rule to myself that I will never write when I know I'm at my most poorly, and let out any feelings constructively way before they get to the point of destruction.


And so, to start afresh slightly today's post is going to be on things that have helped me with my symptoms and their consequences. I take so many supplements and medications that it is probably a bit difficult to say exactly what makes the most difference, but put together they seem to work. Working out which is most effective scientifically is not possible right now as it may require removing an important medication from my collection and may send me back into a relapse, which I can't afford right now!


And so firstly, here are some supplements that I take:

• vitamin D - this was suggested by a rheumatologist I saw last summer who found that I had low vitamin D levels in a blood test. Not necessarily related to CFS/ME but it has been linked to muscle function so maybe it has some importance.
• l-carnitine - this supplement was recommended to me as one that may or may not help. I'm not entirely sure what it does, but I think it may again have a link to muscles.
• co-enzyme Q10 - this supplement was recommended to me by a CFS/ME consultant on the NHS but I don't think it has any clinical backing. It seems to have had some effects though! Possibly linked to the production of energy in cells?
• avoiding dairy food - not technically a supplement, more of a subtraction, but it's to do with diet so it's going here. I haven't eaten dairy since I first got ill almost 5 years ago. It made such a difference! I am mildly lactose intolerant anyway and somehow the CFS/ME exaggerated it so this was definitely a good move.

Secondly, here are the medications I take. I know some people are reluctant to take drugs but I have really found these helpful:

• hydroxyzine - (brand name Atarax). This is an antihistamine but I take it because it has a side effect of drowsiness, with the aim of it helping me to sleep. It doesn't make me drowsy but it does make me feel more relaxed and has made so much difference to my sleeping patterns.
• vitamin b12 - I have put this here because I have it administered by injection by a nurse instead of taking tablets. These have been taken weekly so far but I think that is due to go down to fortnightly. I believe these have helped a lot too, but having no original b12 deficiency, their prescription was a little unorthodox.

And lastly, behavioural things I do to look after myself:

• focus on keeping calm - any kind of stress or excitement can increase symptoms and so I focus throughout life on keeping calm and in control. Not easy of course but recognition of these emotions in itself makes a difference.
• limited exercise - I hate this one, I would love to go running but it has made such a difference to limit my exercise to what my body can do without complaining.
• proper rest breaks - again, I don't like this either because at 20 I want to be out there doing things but consciously stopping for breaks gets me through the day.
• making all activity more energy efficient - this involves some conscious thought and self awareness, and so maybe talking it over with a friend or family member may be helpful. What can I do to make that activity less effortful? (e.g. sitting down while cooking).

I think many people with CFS/ME have their own concoction of pills and supplements but I thought that this may give people some idea of things they can try if they are new to this. Unfortunately a lot of these cost money (either shop bought or prescription charge) but I think you can get help with prescription charges if necessary.

"When I'm on my knees, I'll still believe"

These last few weeks I have ventured to join a student study group that is run by a nearby church, not the church I usually go to though. They haven't felt betrayed and have accepted me into the group, much to their credit.


So far I have been to two bible studies, both on separate parts of Ephesians. Today's study focussed on the first half of Ephesians 3, and Paul's (previously Saul) calling as a Christian. This study has demonstrated to me that the path that you think you should be taking, just by assessing yourself and knowing your skills, isn't necessarily the path God has called you for. Just as Saul thought that routing out all the Christians and having them killed was the best way to serve God, I may have a completely wrong view of my direction and skills (I haven't been nor plan to kill anyone though!).


This has helped me in the face of so many limitations to know that even if you don't have the skills or physical strength for what you think you should be doing, God will give you a path you can do, and give you what's necessary to complete it. There are so many things I would like to do for God right now, and it has puzzled me that God would prevent me from doing these things for him but this says to me that it's OK to not be doing these things because God will provide some even more amazing things for me to do that will help more people and will give him more glory.


It also says to me that I don't have to do this alone. Sickness induces such immense loneliness in people, and chronic illness simply equals chronic loneliness. But God has commanded us to not fear or be anxious because He has said so many times that He will be with us through absolutely everything, and that we are capable of anything because He can equip us to complete anything.


"I can do all things through Christ who gives me strength".