"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."

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.

"So when your hope's on fire, but you know your desire..."

I'm a big Mumford and Sons fan, but unfortunately their songs aren't the most cheery. I felt that this quote fitted my predicament right now, but unfortunately I have no opportunity to be a "Hopeless Wanderer" - I don't need anyone to "hold me fast" as I've got an illness that does that anyway.

What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.

I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.

Acceptance

These last few weeks leading up to the Christmas holidays have led to me asking a few big questions about my life. Do I want to stay at university? Should I stay at university? And then the opposite questions which should be asked, as I have found that sometimes the answers don't match up.

Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.

The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.

I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.

Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.

But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.

I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.

I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.