Living within limits has its advantages

Dear newly diagnosed Fibromyalgia and CFS companion,  After what might have been a very long time you have finally been given a “diagnosis” for that elusive group of symptoms you have been experiencing.  At last, you feel that you are not going mad and that it is “not all in your head” as some may have told you.  You now belong to a “group” because actually there are so many others out there going through the same or similar experiences to you. This to some degree will give you peace of mind, there is some sense of certainty once you get a diagnosis, now you have something to work with, something to treat and a label that you can use to explain to everyone why you have been feeling so awful.  This is a positive thing, but in other ways it is just the start of another journey, a labyrinth we are all trying to navigate.   We live in a world where we want instant fixes.  We live within a medical system where doctors are used to treating just the symptoms.  You will find that living with Fibromyalgia  (Fibro amongst the “in” crowd) and Chronic Fatigue Syndrome (CFS) is a full mind-body experience.  You will have maybe a range of symptoms, which confuses doctors, as they do not always know how to go about treating you.  Most of us turn to the world of complimentary medicine because it´s philosophy is to treat you as a whole.  You might also find that you do not get the support from your family and friends in the way that you would like.  It is to some extent an invisible illness where all the suffering happens on the inside, because you may not look ill, people will struggle to empathise.  This will likely make you feel lonely at times. What you will find is that really nobody is sure what causes Fibro or CFS and therefore, how to treat it. After all, it is a syndrome, which means it is a group of symptoms and not a defined illness with a defined root cause or cure.  It will be a case of trial and error to see what helps you.  You will see that there is a lot of advice on the Internet and there are many people who may not have the exact same symptoms as you yet they have the same diagnosis, all of us fighting for answers. Having spent literally years researching this illness online and after trying many different therapies and spending more money than I care to acknowledge, I have to tell you I still have Fibro and CFS.  However, I am much better than I was a few years ago.  What has worked to improve my health may or may not help yours.  Do the research and try the methods that appeal to you, but be prepared for a lot of failures and of course some successes too! However, the one single thing that cannot be promised is a cure.  This can be very difficult to accept, knowing that you may live your whole life navigating ailments that can keep evolving or changing over time and that impact every single day of your life.  Acceptance was a tough call for me.  Initially I refused to accept that I had to live with this.  But when I say accept, I do not mean give up, it is to accept that this is part of your life experience and it is not just something to be removed.  In fact, the more I furiously fought hard against the “enemy” the more tired and sick I became. After 10 years, I am still working on my health everyday, but not as an exhausting battle to be won.  Once you come to accept your journey then the good news is there are so many blessings to be found in living with Fibro and CFS.  In fact, in some ways I see it as a gift, or at least it has brought me gifts.  It might be hard to imagine this, but bear with me. You will notice that the daily strains of our modern lifestyle put a lot of pressure on you and your symptoms will act as a barometer.  When you have too much stress in your life, your body will tell you, when you are running around too much, your body will tell you, when you have emotional difficulties, your body will tell you.  Your body in a way is demanding balance.  Before I started getting my symptoms I was what is classed as an A type personality, I was very hard on myself and on the go most of the time.  The gift I have received is that of finding a better life balance and improved self-awareness.  I have learnt to notice the messages my body sends me and I have learnt to honour them and slow down and I have also learnt how to improve my emotional health.  Then there is the gift of resilience; you will have to get up pretty much everyday, even when you might prefer to just stay in bed.  You might become an expert in time management too, because you will need to preserve your low energy bank. But quite possibly one of the biggest gifts and one that I am still working on is the gift of self-love.  This has been particularly hard for me to learn.  My natural inclination like many others is to focus my care and attention outwards towards others rather than towards myself. After facing several challenging life lessons, I finally realised I did not have enough compassion for myself and I now try to focus more on nurturing myself both emotionally and physically.  In fact, it was when I started doing this that my health really started to improve.  I must point out that I am not stating that we should become selfish; we just need to learn that we have only got so much love and energy to pass around and some of that has to be kept for ourselves.  As you may have heard somewhere before, treat yourself in the way that you would treat a loved one.  Finally, leading on from self-love, I found my sense of empathy deepened; suffering gives us the capacity to deeply empathise and have compassion for the suffering of others.  This can lead onto beautiful things.  For me I eventually became a Psychotherapist so I could help others in their journeys and I also became involved in animal welfare. So fellow Fibro and CFS companions, please do all you can to find the treatments that can help you, look at the forums, and speak to the doctors. However, above all do not forget to love and nurture yourself both physically and emotionally.  My experience became not a “me versus Fibro and CFS battle”, but a call to self-care, and if you look out for them, it will also bring you gifts along the way, I am most grateful for mine. Good luck.

This particular subject is a tough one for people with chronic illness.  In my case managing the expectations of myself and of others has been particularly difficult over the years.  Chronic Fatigue Syndrome is all about energy and mainly lack of it!  The amount of times people have said to me “but you don´t look sick”!!  Well maybe not, but everyday I have to think about how much energy I have and how much I can expend.  As a previously active person managing myself can be frustrating, my head wants to do more, but my body doesn’t.  Accepting these limitations can be hard, and I talk about acceptance in another of my posts. But this is all about expectations so I will start with managing your own expectations and then about those of the people around you. Your expectations Trying to meet unrealistic expectations can lead to feelings of helplessness, guilt and stress.  It is important to prioritise well and know your limitations.  An interesting concept I found online is something called the Spoon Theory, imagine you have a bunch of spoons and each spoon represented an activity that you want to do that day.   Many people can use a countless amount of spoons in a day but when you have an illness the amount of spoons you have can significantly reduce.  With Chronic Fatigue Syndrome even the smallest activities might be overwhelming, taking a shower, one spoon, washing up the dishes is another and on it goes.  These types of activities we often take for granted, however, when you look at it this way you can see pretty quickly how many spoons we use up in energy each day and how quickly we can start to feel overwhelmed. Trying to plan your days and use up the amount of spoons we can realistically manage is important and some days we are going to use less spoons than others simply because we don´t feel great that day and we have to try and be at peace with those days too. Others expectations Managing the expectations of others when you have an illness can be a tougher one to navigate, especially if people cannot see your illness.  In my case I have had many occasions where I have had to cancel arrangements because of fatigue and friends have felt let down by me.   There is also this horrible impression that some people get about people with chronic fatigue and that is that you are being plain lazy.  Trying to educate the people around you can be a minefield especially when you have a condition that fluctuates (i.e. some days are better than others). For me communication is important, explaining the effects of the illness can help them to understand it even if they cannot appreciate how it feels.  Be open and express how you feel when someone is asking unrealistic expectations of you or is maybe judging you in a way that is not helpful.  Try not to over commit yourself and learn to say no if you feel that it is one activity too much for you.  If I am invited to an event by a friend then I might say, “I would like to come but do you mind nearer the time”?  This then does not oblige me to go if on the day I feel lower in energy.  Are there any other ways you can suggest to manage others expectations of you?