|Vivi-Mari Carpelan: "Even After All These Years I'm Still the Same",|
handmade collage with artist's photographs, copyright 2012.
Read about it here.
Poverty and ill health is not a choice. How to deal with them is a choice, but never easy. Just because someone looks well and possibly even succesful, doesn't mean it's easy for them to manage. Comparing and criticising is not on. Be respectful of other people's difficulties, please.
There are people out there who question whether those who don't look ill are actually disabled. Generally speaking, people seem to believe that you have to sit in a wheelchair in order to qualify. Some of the people who feel that "you should just get a grip and get over it" are able-bodied. Others, on the other hand, state that they have a whole host of physical symptoms but they "still drag themselves out of bed every morning in order to do a good day's work". The arrogance! You can forgive some people for being ignorant, but the ones who claim to have "the better attitude" because they think they are managing life better than you are simply patronising bastards. Having the courage to admit that you're fragile is surely a good thing (read more in my previous blog post). I'm not sure whether it angers or saddens me. I feel sorry for these people who are trying so hard to be heroes in other people's eyes. What do they have to prove? Of course they can't tolerate weakness in others - they can't tolerate it in themselves. Therefore, they can push you over the edge.
I had a friend once... she clearly congratulated themselves in being somewhat disabled by various ailments but not identifying with it, and therefore being a superior person. Every time this person showed up, she would offer me criticism, but no support. She seemed to feel that offering others harsh feedback even when no one had asked for it, was her duty, and claimed they wanted the same treatment (i.e. brutal honesty). Well, all I can say is, if she felt she could handle it then she clearly had no idea what it's like to be highly sensitive and stressed as a result of a chronic condition. She said she wanted to know what my life is like, but when she find out about it, her reaction was to criticise it. Eventually I had to let this person go. While people like this may mean well, they really only cause me stress and grievance, as their best intentions equal constant insults and even abuse. Naturally, as a matter of course, I ask myself, why do I react so strongly? Of course they push some of my buttons, not least the one that makes me feel that I haven't done well enough in life. But I acknowledge this, and also acknowledge that I don't have to put up with anyone whose only goal in life is to smother their own ego. You can tell who they are by the fact that they won't listen to you, whether it be how you feel about your own life or how you feel about their viewpoints. Usually your initial intuition about them proves to be right. I have also observed, that people with an innate compassion motivate me to think more about my achievements than my losses. Isn't that interesting?
There's a lot of talk about how people are having to manage on very little money at the moment. The UK government is putting a great deal of pressure on those who are marginalised. The benefits are ridiculously small. It's typical, that media bends over backwards in order to tell the world how people survive on nothing, but hardly ever talk about just how devastating it is to try and survive on almost nothing at all. I'm very lucky not to be dependent on the UK government for support at this point in time, but I know precisely what it's like to be ill and poor, and have a great deal of sympathy for those who are forced to struggle with these authorities in order to survive. My situation used to be extremely bad. It's still not great. I really don't think that I deserve to have such a hard time, though somewhere deep inside I question my right to lead an easy life when so many others are suffering. I feel that my situation will change, but for the moment I must wait. I'm not sure why, or for how long. It's quite disconcerting but I keep holding onto hope and put up with not feeling that I can control my own fate very much at this point in my life.
When I was very young, I was a highly employable person. I held many lovely temporary jobs inbetween semesters or courses, though even then it was quite hard for me to cope. Later on, I made art during the holidays. I did well as I sold almost everything I made, that's almost a hundred pieces. In spite of my personal distress, there was some flow in terms of how I managed in relation to the rest of society. That has gradually disappeared. Collective issues have become so powerful they override almost any positive intentions that I have. I also realise, that a chronic illness means that you have to stop pushing yourself in order to fit in. Your body will inevitably degenerate, and so you must put more effort into keeping it going and less effort into pleasing the rest of society. Taking care of yourself becomes a full time job, and there is only very little time left over for real work, whatever that may be. The way things are going, the government is more and more fascist, and less and less sympathetic with people who are marginalised. For those who are disabled (by the way, it took me a long time to admit that I belong to this category), it's very disheartening to feel that we are only worth just barely keeping alive. Efforts in actually improving our health aren't recognised as important or valid. Those who already are weak and stressed are made worse by being submitted to ludicrious bureaucracy (endless amounts of forms have to be filled in), as well as having to live off so little money their lives are hardly worthwhile.
We all know that diet and exercise are the corner stones of health. Even if you're already chronically ill, you can improve your life quality drastically by taking the right measures. I'm writing about my own experiences from this view point because there's a lot of quasi spiritual peer pressure to fix one's brain patterns and to change one's reality. But you have to start from the bottom up, not unlike the ideas presented in Maslow's hierarchy of needs. Nourishing food and exercise comes first (not sex,though), sometimes even before good rest. This is because you can't have good rest if your body isn't a bit shaken up by mobility and has had a boost in the way of food that stimulates the digestive system in the right sort of way - the digestion helps elminate toxins during rest, apart from many other important things. As much as I would like to engage in spiritual practices, I do find it difficult to find the time and energy after a lot of it is spent on my basic needs. This is what it's like when you live from hand to mouth, and focused mainly on getting through the day because of debilitating fatigue. The unproportionate efforts you have to make just to make it through the day bog people down. Keeping your head clear of the most depressing thoughts is hard work too.
I may be the first to preach about the importance of sufficient amounts of exercise, but I also admit that there are times when I just don't have the motivation to do more than the absolute minimum and allow myself a bit of laziness. There are people who aren't quite disabled yet who tend to ignore the body's warning signals. It's true, of course, that they also feel peer pressure to keep performing and making the kind of money they are used to having. Unfortunately, once you're kaputt, you will regret having pushed your body and mind so much - you can't turn back the clock and harm has already been done. I can see that so clearly in my own life, and it's not an easy thing to look at. What you do learn, however, is to do whatever you can to slow down the degenerative process and to pace yourself.
The other day I had spent some credit I didn't really have on a CD with some music. This album (Caro Emerald, "Deleted Scenes from the Cutting Room Floor", vintage style music with a modern twist, not very expensive) was in fact quite stimulating to exercise to - my motivation was suddenly renewed. I put some extra time and effort into shaking my body from the core. I could feel how (somewhat) neglected my body had been, and how I could probably loosen up some serious stiffness of the spine and surrounding muscles. I was really knackered and shakey for days afterwards but still feel a bit more motivated to make my body a bit more mobile and keep myself from becoming podgier. Foodwise, I know what to eat on a tight budget but I'm very tired of it. It may be one of the reasons I don't have much of an appetite. I find it increasingly hard, after decades of eating the same food... but what can you do? I make hoummus and carrot salad with apple, and have it with brown rice, as often as we can bear to have this.
Of course, the authorities have never been concerned with the fact that I can't tolerate many cheap chemical concotions, nor eat "most anything" because of my condition. I have to be very careful not to upset the IBS. I can see how easy it is to slip into the mode of eating highly processed foods, because it's cheaper and readily available, and you also start craving simple carbs when you're down. The other day, I was standing in Lidl, looking around. 80 % of the women in the store were grossly overweight. It's scary. There's been talk about disabled people having to scavange dustbins for fresh food. I pray we don't end up in that situation though it's looking very dire. Ethical concerns about where your purchases come from fly out of the window when you have so little to live off. The inability to support these can be soul destroying for some people. But some things I have to hold onto, such as using natural Weleda deodorant rather than the cheap anti-perspirant from the supermarket. I believe they cause cancer. It's just a question of priorities, though your options may be running out eventually (I was without deodorant for two months, but it had the effect of me having to wash my clothes more often... you just can't win). We had to give up Tai Chi. I still hold onto singing twice a month while my husband goes to the pub... it's breaking the bank, though. Not being able to go anywhere, let alone home to Finland during the summer, is also quite depressing. It's a double negative because of travelling also causing exhaustion. I don't know what the answer is. Society is in shambles and that's what we're dealing with in our personal lives. There is no good structure to rely on.
What I want to say is, one should put a bit of pressure on oneself in order to survive better, but there's a limit to how much pressure the unique you can take. You must be careful and aware of this limit. If you can, please add some Tai chi, Qigong or Yoga, as well as meditation, to your daily practices. Sweaty exercise that gets your heart pumping and these two other practices address different parts of your being. But the body comes first, because the body has to support the rest of you. It's a structure you can influence.
A year ago, almost to the day, I filmed a day in my own life. You can watch it here. I'm not sure whether it expresses how difficult life is when you suffer from fibromyalgia. Perhaps it looks like an easy life. I have tried to make it easier for myself. But it's still a tricky thing to manage and it doesn't get any easier as your body is growing older.