One thing that no one tells you about having a chronic illness is how much of your personality it eats away. So many of the things that have defined my life (playing the flute, singing in choirs, dancing etc etc) are now basically impossible, so I've been trying to find some relief in the things that I can still manage. These are mainly characterised by being hand work, such as crochet and hand sewing my hats. The state of my health has caused me some pretty big bouts of depression and anxiety (fairly understandable when confronted with the need for a double lung transplant!) but being able to pick up a crochet project or hat and feel the rhythm of the stitches as I form them is incredibly soothing.
When my mind is in a tumultuous mess, the repetitive nature of crochet and sewing calms me in a way that some people compare to meditation. I have tried Mindfulness Meditation as recommended by my psychologist, and I have found it helpful. The main problem I have with it, is that it mostly focuses on using your breathing as a way of centering your thoughts in the present and not worrying about the future or the past. I can see how this can work but when your breathing is a massive problem, focusing on it just makes me more stressed, not less! So sometimes what I need most is a task that prevents my mind worrying endlessly about all the stuff that is driving me nuts. Crochet and hand sewing hats takes enough thought and concentration that it prevents the endless spiral of depressive thoughts that are so easy to slip into. I really do find a great deal of solace in stitching, and its not just me- a quick search on the Internet shows how many people have found relief from mental health issues using knitting, crochet, embroidery or other hand crafts as a form of meditation, for example this article from the Craft Yarn Council has numerous exampes of knitting being used as therapy for the seriously ill. So it's not just me!
Another thing no one tells you about chronic illness is how it can leave you feeling out of control. I find this particularly hard as CF or not, I like to know what is happening in my life and that I have a plan of what I ant to happen and how I'm going to get there. Sadly, n many ways it feels like the illness is in control, because you always have to take into account all the extra stuff that having something like CF entails. You can't just decide for example, to go out to the cinema, you have to consider if you are up to going there, can manage the air con in the cinema (it can really set off a niggling cough) have you got all the meds you need to have with you have you got your insulin and diabetic contraptions and so on and so on and so on.... I'm not saying it's impossible to do things, you just have to be incredibly organised and know that there are these controlling factors to pretty much every decision you make. I really don't like that my CF makes me feel that it is control and I am not (understatement alert!). I'm not saying that healthy people are always in total control of their lives, but they can be pretty certain that if you do (A) then the outcome will be (B). When you add chronic illness into the equation doing (A) may sometimes result in (B) but its more likely to end up being anything from (C) to (the square root of five) and anything you can imagine in between. With something like CF at the stage I am at, you can plan and prepare all you like, but inevitably your body decides to throw a hissy fit and suddenly all bets are off. I hate that one day I'll feel ok (at least ok my standards!) and I'll be able to do something simple like having dinner with friends and the next I can barely get out of bed cos I've got a raging temperature and I'm trying to breathe through treacle- I really cant express how frustrating this is and how angry it makes me.
Crocheting and sewing gives me some semblance of control back, I can still do these things, the way I want and and my CF can just sod off! This gives me a great deal of satisfaction, however simple and small the project may be, its still mine. When everyday tasks feel like insurmountable problems, actually making something from start to finish really does help prevent the feelings of being out of control, of inadequacy and uselessness that having CF can create. I frequently feel that I am just a huge burden on Mr EB and my family and friends. They have never given me any reason to think that, but it's hard not to feel that way when you need so much help to do things that everyone else takes for granted. To try and help asuage these feelings I have been searching online for articles and books that might help me learn to deal with these difficulties in a more proactive way. One book that I absolutely adore is Ruby Wax's Sane New World. Not only is it hilariously funny in its explanation of Wax's own metal health problems, but it includes lots of exercises based upon mindfullness, that are easy and simple to do.
Another really interesting article that found online is by Dr JoAnn LeMaistre, all about Coping with Chronic Illness. It's actually a shortened version of a book of the same title, which is sadly out of print, but despite its relatiely short length it is a really helpful read. She talks in depth about setting realistic expectations of what you can achieve and trying to live in the present. If you have a chronic illness I seriously recommend reading her article, as it really does cover loads of helpful ways to cope with your reduced health. So until I either get listed for tranplant, or by some miracle a treatment does become available for my genotype I shall be crocheting and sewing myself into some sense of sanity! If you'd like to see some of my crochet projects, do check out my projects page on Ravelry.
Crocheting and sewing gives me some semblance of control back, I can still do these things, the way I want and and my CF can just sod off! This gives me a great deal of satisfaction, however simple and small the project may be, its still mine. When everyday tasks feel like insurmountable problems, actually making something from start to finish really does help prevent the feelings of being out of control, of inadequacy and uselessness that having CF can create. I frequently feel that I am just a huge burden on Mr EB and my family and friends. They have never given me any reason to think that, but it's hard not to feel that way when you need so much help to do things that everyone else takes for granted. To try and help asuage these feelings I have been searching online for articles and books that might help me learn to deal with these difficulties in a more proactive way. One book that I absolutely adore is Ruby Wax's Sane New World. Not only is it hilariously funny in its explanation of Wax's own metal health problems, but it includes lots of exercises based upon mindfullness, that are easy and simple to do.
Another really interesting article that found online is by Dr JoAnn LeMaistre, all about Coping with Chronic Illness. It's actually a shortened version of a book of the same title, which is sadly out of print, but despite its relatiely short length it is a really helpful read. She talks in depth about setting realistic expectations of what you can achieve and trying to live in the present. If you have a chronic illness I seriously recommend reading her article, as it really does cover loads of helpful ways to cope with your reduced health. So until I either get listed for tranplant, or by some miracle a treatment does become available for my genotype I shall be crocheting and sewing myself into some sense of sanity! If you'd like to see some of my crochet projects, do check out my projects page on Ravelry.