Six values I use for living with fibromyalgia.
I’ve never considered what my ‘ values’ were until now. I had my work, my family, my friends and a very busy life. It’s not the sort of question that comes up in everyday life and my friends and family have never asked.
Its taken some thought, which suggests that I probably didn’t know them. That’s not to say I don’t have any. We all have them but use them subconsciously, without even thinking about them. Values are principles or standards of behaviour; or a judgement of what is important to us.
My values now, are completely different to the ones I had in my teens, twenties and thirties. Of course they are, my life has changed, my life is different to how it was planned. I have changed as a person. My ideas of love, relatiionships, success, wealth and self preservation have changed.
Having fibromyalgia has changed me. Initially or should I say for the first 15 years of FMS, life just rumbled on. Nothing much changed. I continued work and life just the same. It took increasingly more effort but it was business as usual.
It’s been 13 months since I became severly fibromyalgiac (made up word). I’ve had time for procrastination, maybe too much time, but there are certain things that are more important now, than I ever expected them to be.
My first ‘Value’ is to accommodate yourself. Give yourself time and be patient with yourself. We are all so set on getting things done in a certain way and in a certain amount of time which may no longer be possible. Pain and fatigue are such difficult symptoms to live with. They will take a toll, so don’t feel guilty for not being able to do things in the same way any longer, it is not your fault.
Get the right doctor – your GP may not know everything about FMS but having one who is sensitive to your symptoms and respects your needs is worth their weight in gold. However, GPs are hard pushed, over worked and have just 10 minutes with you. They want to get you the right care and the right treatment but they don’t know everything about every condition, thats why there are specialists in the NHS. Do your research find the answers tell your GP if they are wrong. You know way more about your condition than your GP does. Unfortunately google searches will give you all sorts of useful and lets say less useful information, so make sure the information you get is from a trusted source. If you feel your GP does not explain things to you with good evidence, change to one that does. You may find a different GP in the same practice, so try them all.
Protect yourself like you would a baby. The most effective way of doing this is by having a comprehensive understanding of how FMS affects you. This includes mind and body awareness. It takes time, but understanding the problems which are caused by FMS and those which are not, is essential. For instance, I know that if I get bilateral pain (same pain on both sides of the body) it is most likely FMS but if the pain only affects one part, on one side it may be something that needs more consideration.
Have dreams. Remember you can still do things. It Maybe that you won’t be able to climb Everest anymore but there will be your own ‘personal ‘ Everest to climb. It may not be a mountain but sometimes it’s the small things that give us more satisfaction.
Appreciate the small things. Sometimes it’s easy to overlook small victories but you should reward yourself for a task that you have started doing again or that you have just started doing independently. As I said before, sometimes the small things are equally or more important.
Lastly and most importantly for me is honesty. Be honest with yourself and with others. Tell people, if they ask how you are that you are in pain or that you are fatigued. Never ever say you are fine if you aren’t. People only ask the question if they want to know the answer.
I suppose my values are about how I want to live my life, the direction I want to take and an internal compass that guides me. Values shape us and make our lives relevant., they provide us with the direction we need to achieve success or to realise our dreams.
— Helen Smith