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.

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.