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 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.

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.

Bit of an upward turn.

After a few more negative posts, I feel it is time for a more positive note. It is almost Christmas after all!!

I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.

I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!

In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.

The Pain of Diagnosis

So yesterday I went to the rheumatology department at St. Peter's Hospital in Chertsey, Surrey. The receptionist and the nurse were both friendly and helpful and everyone I had met at the hospital was eager to help. I was even ready to let the fact that they had lost my referral letter for around 3 weeks slide in the face of such helpfulness.

On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.

It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).

He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.

My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.

I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.

My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.

In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.


I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.

Badly done, NHS, badly done!

The Infamous PACE Trial - Ignorance is No Excuse

So I can't be alone in my experiences of the NHS. Thankfully, other than the whole CFS/ME thing, I have always been very healthy and I've only been to A&E once and as a hospital outpatient once, both for fairly trivial things. And they have always been helpful.

It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.

They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.

Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.

Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.

Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!

And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.

CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.


I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.

It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.