I’ve taken a bit of time away from the ol’ blog to try and determine how best to present my story and to concentrate on which direction my little life is now taking. Theres been a lot of Winnie the Pooh style “think, think, think” happening, but I now think I have a grasp on it (emphasis on the “I think”). This is a little blog post about what I have learnt so far on this challenging journey.
Learning to live again
The first step has been quite simply, learning to live again. When you’ve been ‘out of order’ for a little while, you almost forget what it means to be a well functioning part of society. You realise that you took for granted all those years when getting up in the morning, however miserable, was nowhere near as hard as it is today. You took for granted that meeting a friend for coffee was a pleasure and not an effort (but it is still a pleasure too). You took for granted that running your kids to the after school activities was a piece of piss, and now you just can’t wait to get home and close the door, knowing you don’t have to go back out again (best feeling ever). It has taken me months to accept that I have had to slow down and appreciate what I can still do, even if it does require a little, or a lot, more effort than before. I’m by no means housebound, or incapacitated, and my body does still work, albeit painfully, and if it works, then I just have to use it to the best of its ability.
One of the ways I have been able to muster the strength to ‘live’ is through mindfulness, a topic close to my heart that I will definitely share with you soon. The joy of living, and being present in the moment is a powerful remedy to most problems we all face at some time in our day.
Learning about my body and how to live with pain
Learning to live with widespread chronic pain that I may never rid myself of has been one of the biggest challenges of this whole journey so far. There are so many other symptoms, and they all kind of intertwine with each other to be a massive pain in the ass, but the pain is one of the most bothersome characteristics of the beast for me.
I’m taking the time to monitor my symptoms very closely and learning about what makes it worse, what makes it better, and what may now be major no go areas for me. Again, I will share my triggers in a later post, but I do now believe that what anyone with the F word should at least consider is working out why the pain was worse on Tuesday than it was on Monday? What did you do differently, and how can you try to prevent this from happening to you again? Trying not to avoid life and hide under the duvet cover is my one rule in all of this, and some days it really is very hard, and drives me to the point of exhaustion (but then I can’t sleep, doh!), but sometimes I find great satisfaction in knowing that I have tried my best and that is good enough.
Learning to live with bad days and learning to appreciate the good days
Some days are truly terrible. and some days are just OK. Occasionally I surprise myself, but those days are few and far between at this early stage. Again, mindfulness has been a wonderful tool for me in being present and not being too hard on myself if all the symptoms and extra effort I have made on a bad day have left me with deep dark circles around my eyes and a little bit snappy with my poor husband (god bless that man).
Learning how best to function in my ever so important career as a midwife
Everyone who has been supporting my on this journey will have heard me talk about my anxieties about managing work when I return. Just today I had a really good meeting with my occupational health team and for the first time it all now seems realistic and I even have a date set to go back. Yippee! However, this is just the beginning of the journey, and I will definitely be sharing more with you as I return and tackle the job I love head on. For now I am content with the love of my colleagues, the support from my amazing manager, and the overwhelming encouragement from all those that know how important my career is to me. Please, if you have a job you love, and are affected by a long term chronic illness, find a way to try and make it work. It may not look anything like what you expected, but it may well be magical. Also, just ask if you can work flexibly, if you can jiggle your hours, if you can have time to attend important appointments, and time to care for yourself. If you don’t ask you don’t get (and no I haven’t got the answers to these questions myself yet, but I WILL explore under every stone)
Learning to be a parent, to the best of my abilities and not letting the F word affect my so longed for children too much
Oooooh, this has been a toughy and I’m still working on it. When you are tired without a chronic illness your children can be annoying, but add in a day of pain, a headache, lack of sleep and a thousand complaints such “mummmmmyyyyyyy, she hit me over the head with a spoon!” and you will be forgiven for wanting to hide in the toilet with a packet of biscuits and your iPod on full blast through headphones (seriously, don’t do it, it makes you feel crap, also, I seriously wouldn’t swap the thousand complaints for anything in the world, not even getting rid of fibro). The biggest thing that has helped in this department is explaining to our girls, who are old enough to understand, what is happening to my body at the moment and that they can do to help. Sure, they still push my buttons in the only way 6 year old siblings do, but at least they understand why some days my fuse is a little shorter than others!
Also, and this doesn’t come just with parenting and a long term condition, but parenting in general, TALK TO YOUR PARTNER! Work out between you what you expect from your kids, and show a united front. Minimal confusion = more family harmony (whatever that is, just made it up).
Learning to maintain relationships with those people close and important to me.
Another tricky one. Typically most people work during the day and are busy with their families at the weekends, and so want to meet in the evenings. The kids only go to bed at night and so your precious time with your partner usually come in the evening too. THE EVENINGS SUCK. If there is any time of the day I am going to be at my worst, it is anytime from 4-5pm. Sadly, it all goes downhill from there. That being said, I have had a couple of evenings out and thoroughly enjoyed myself (then paid for it the next day, and not in the fun “I had too much to drink” way). However, my friends, and husband believe it or not, are incredibly important to me and so sometimes if I can suck it up and have an easier day the next day I will, because there is nothing worse than being lonely, and this is a lonely journey at times. I have had to bail out twice (one of them was tonight in fact after a gruelling physio session and horrible back pain) but luckily for me, my lovely friend understood (luvoo forever Annabanana).
Learning it is ok to say no
It can be really easy to make yourself feel bad for not keeping up or joining in what society expects you to join in, but what I feel is most important for me is that if I do say yes, I can commit to that yes and be good at what I do (even if it is just idle chit chat about smutty subjects). Don’t say yes if your yes is going to followed up with half hearted effort because you are too sick. It is better to do a few things well than to do many things, well, rubbish. In the wise words of Grange Hill, just say no.
Thats it from me for now, just a brief little peek into how I am navigating life, and I have so much more to share, but I need to get organised, something I haven’t been for a while and I have some major blog planning to do 🙂 for now, I am content with spring and the new life it brings. Here is a snap from a mindful walk I took last week.