Monday, 21 April 2014

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.

Wednesday, 16 April 2014

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.

Wednesday, 9 April 2014


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.

Wednesday, 2 April 2014

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.