Inspired by a post by dear Callie at Basic Missions www.basicmissions.com I am blogging today for National MS Day. Please do go to Basic Missions and read the article there which is very informative and has practical things we can do to help and is written by people who are living and managing and thriving with these challenges daily so they know what they are talking about.
I of course do not! I do not have MS, I have (among other things) M.E, but many of my symptoms are similar. And I know how much of a challenge they can be. So I am posting here also about some things we have found useful about managing these symptoms and their effect on our lives over the years. I know I may be talking to people who already know all this and more (and if that’s the case, please, we always want to learn, share some tips with us! )but I think I didn’t use to know all these things, at some point either someone had to tell me or we worked it out through living and managing and finding creative ways to overcome. Because really, if I had listened to the social worker who told me I was unfit to do anything at all in the world, because I am so ill and so limited, physically and coginitavly then well, I wouldn’t be typing this today and possibly raising some awareness and helping some people.
I am aware that this will not be as well written as I would like it to be.
Writing this is my resistance. Writing this, when I know it is not what it could be, when I know what I used to be able to do, yet I am still here, still turning up at the page, writing and living, even though I am not what I could be. I am writing and that is something. It is strong. I am writing even though it is not everything I want it to be. I will not let the pain take this away from me. If I was not ill then I would not have had the experiences I have had that have lead me to this place. And so many of them have been fabulous. I love my life. I think my life is better now, even though it may be filled in many ways with pain, I see so much beauty. I get scared and ill and my friends get scared and ill and some have died, and then we are all sad and scared together, but truly I have never known such wonderful, inspiring and strong, loving people and I am so blessed to be part of these circles of wise and real women. We live every day. We know how lucky we are. We know about coping from moment to moment and breath to breath, and I know that what I am writing now is something. I could just lie here and say ‘I am ill, too ill, I can’t do it right” or I can turn up here and reach out and LIVE and maybe it’s not what it could be and maybe I can’t access the thoughts, the parts of my mind in which I know what I want to say and how, where all the words and memories and concentration and understanding that I can’t get to any more are kept but sometimes some of them shine through. All the love and the hope and the joy in which I live shines though. And I am grateful. I am here now.
Ok, we are trying to get through the brainfog garbel here, breathe, ok:
Tips and hints and practical things that have helped us and hope they help some other people too:
Sitting and Lying Down: http://www.survivingsevereme.com/sitting.html
This is brilliant, wonderful Clare Wade and so helpful. This book has been a lifesaver to us, really, it was the only thing we could find published on severe M.E until recently. There is, I think, lots of useful info for people with many chronic illnesses. We have sent it to people with spinal injuries, canser, surgery, fibromyalgia and other conditions and have had great feedback. Clare Wade wrote this when she was so ill she could only dictate a line a day or so to her carers, it has made our lives os much easier, what a triumph, thank you Clare!
Pain management and general coping: http://breathworks-mindfulness.org.uk/
We had done a lot, believe me, a lot of mediations and visulizations and coping methods for pain and general – I am ill and in lots of pain and stuck in bed and bored and too tired to move, turn over, sit up, eat and would much rather be better or take a break from my life – type feelings and we have found breathworks, the course, C.Ds and the book very very helpful. They explain how you don’t have to manage a lifetime of pain, just this moment, and we can manage a moment. Pain is so much more fluid than we imagine, even in my worst screamy pain there are moments when it slightly lessons, or will lesson. You can download the meditations from the website. Yay breathworks!
Platypus: http://www.amazon.co.uk/Platypus-Big-Hydration-Pack-Litre/dp/B001BNDKPM
Having tried all the options for drinking lying down we have come to the conclusion we like this the best. Cups and mugs I tended to drop – pain / exhaustion/ muscle wastage can do that to a girl, L coming to hold cup and straw every two seconds was impractical. As for the ‘leak proof can be used upside down drinking cup for disabled adults’ the occupational therapists gave us, the lids fell off when you used it and spilled all over me. Sports cups with lids and attatched straws one has to be able to lift and leak if left on the side on the bed. Baby cups, spill proof tippy cups I couldn’t get anything out of as I am too old to have the suckling reflex – goodness those children must be stong, I couldn’t get water from the cup at all! So after much trial and error we found the platypus. You can use it lying down, you can measure how much you drink, easy to clean, holds lots, doesn’t leak on the bed. You don’t have to suck hard. If you were to roll on it it would not burst, they can stand lots and lots. Easy to get to your mouth on bad days, much more dignified than other things – these are cool – athletes use them – we are wellness warrior we use them too! O.T’s in our area are now telling other people about them they are great! 
Apron: for help at mealtimes; much nicer than a napkin tucked in, or worse, not that anyone ever tried to, a bib! aprons are smart and cool and don’t make me feel as sick. L bought me mine, indigo organic hemp. It came all the way from America to Wales and is super special and my fave colour too. Thanks to http://www.amazon.co.uk/Selfish-Pigs-Guide-Caring/dp/0954423313 for this great tip. Amazing book by the way, best caring one we have read!
Brainfog: what can I say about it? Work out codes – taps and words you tend to use. Linus had become fluent in the amazing brainfog guessing game. So he knows what I want even when I can’t get the words out or work out what I want myself. A basic list of – things that are good when times are bad is useful. Favorite foods to suggest and distractions (We love Harry Potter too, we have it on audio, best thing ever) also Bill Bryson, stories, gentle music – http://www.youtube.com/watch?v=q-0Qo6aKYvY You learn to think around things. So what is ‘ the things, the things, white, make the ceiling up’ would be the walls and ‘nip and hee owie’ would be much hip and knee pain please make it stop now! We are so lucky to have our animals who keep us going. When we spend lots of time as I do and Linus looking after me stuck in the house (bed or on sofa) ill it can be very boring but its ok we have our own little world, with 100 names for the guineas, their own theme tunes (with dances), what kind of cars they would be if they were vehicals (humphrey would be a little tank).
Linked to brainfog is the memory loss, which leads me to, lists and lists and more lists. Journals and so many photograps. I have such memory loss that we record my life all the time. It helps actually. and it inspires me. A friend said to me, ‘ why would I journal, I am sick I sit in the house every day and do nothing’ I said that isn’t true, I expect you have so many achievements, joy and excitements every day. E.g today. Extra lovely juice, persevering with meditation when it was so hard. Managing yoga even if it was about 5 hours after I set out to begin, managing to eat 3 sandwiches, taking my vits without vomiting, exciting post and emails – wow loads!
And yes their is fear and worry and anger but there are good days and bad days and I many spend most of my life in this room but we decorate it and cheer it up – currently glow in the dark star studded paper circles on ceiling, bunting and cloth over the walls for my birthday and a little stand on my table I can put cards/ pics/ affirmation cards/ photos in daily. And always wear body glitter! I may not be able to dress/ look as I would love to but even in bed I wore body glitter daily it cheered me up, sparkly arms, sparkly smile http://www.lush.co.uk/index.php?
page=shop.product_details&flypage=flypage.tpl&product_id=30&option=com_virtuemart&category_id=479
Disability ‘Ettiquette” – people just don’t know what to say, I found this and they only thing stopping me handing it out in the street to everyone who is rude to us is my grandma saying I really really musn’t it would be too rude to do that. Well here it is a guide on what to say and not to say…and just so you know. http://www.barking-dagenham.gov.uk/6-living/accessibility/etiquette/etiquette-menu.html
Diet – now I could write so much on this, but there are people much more knowelgable than me who have said it much more eloquently so here they are: Kris Carr, http://crazysexylife.com/, Buellers Guide, Buellers Healthy Booty Camp: http://www.wellsphere.com/healthy-eating-article/bueller-8217-s-healthy-booty-camp/898269, David Servan Schreiber, http://www.amazon.co.uk/Anticancer-New-Life-David-Servan-Schreiber/dp/0718154290/ref=sr_1_1?ie=UTF8&s=books&qid=1274906495&sr=8-1
Alkeline and anti inflammatory green juice loving supergoodness
Blessings – if you pray, please join us in sending whatever it is you send, prayers, love, healing vibes, thoughts, Reiki, best wishes etc to everyone affected by MS today, those living with it and their families, partners, friends and so forth. Not just today but all days sending love and support to eachother as we survive and thrive in this beautiful but sometimes painfilled world.
Some prayers/ poems I love:
Oh God make me brave.
Let me strengthen after pain,
As a tree strengthens after rain,
Shining and lovely again.
As the blown grass lifts,
let me rise,
from sorrow with quiet eyes,
knowing that thy way is wise,
God make me brave.
Life brings such blinding things!
Help me to keep Thee in sight,
Knowing all through my night,
That out of dark, comes light.
Dorathy Brandt Ford
There are moments when wellness escapes us, moments when pain and suffering are not dim possibilities but all too agonizing realities. At such moments we must open ourselves to healing. Much we can do for ourselves; and what we can do we must do -- healing, no less than illness, is participatory. But even when we do all we can do there is, often , still much left to be done. And so we turn as well to our healers seeking their skill to aid in our struggle for wellness. But even when they do all they can do there is, often, still much left to be done. And so we turn to Life, To the vast Power of Being that animates the universe as the ocean animates the wave, seeking to let go of that which blocks our healing. May those whose lives are gripped in the palm of suffering open even now to the Wonder of Life. May they let go of the hurt and Meet the True Self beyond the pain, the Uncarved Block that is our joyous unity with holiness. May they discover through pain and torment the strength to live with grace and humor May they discover through doubt and anguish the strength to live with dignity and holiness. May they discover through suffering and fear the strength to move towards healing From a poem by Rabbi Rami Shapiro. I know these won't speak to everyone and I hope they do not offend anyone but I love them and they have helped me. Please do not misunderstand me. I am not saying that we were 'sent' these conditions as lessons to make us better people, or that its all worth it if we come out of it stronger. We may use these circumstances for better things but that does not, according to me, ever mean that it was all worth it or that a non disabled person can point and say well 'you needed it to teach you whatever' It helps me to remember sometimes even in the worst moments, that it won't always be like this, good days will come again, bad days too but we are focusing on the good and all the wonder in our beautiful lives. I hope something hear has helped you. Please enjoy the Basic Missions post that inspired this basicmissions.com and please feel free to comment and let me know what you think or any tips we can add. With love and best wishes Grace and Linus and animals xxxxxxxxxxxxxxxxxxxxxxxx All words and pictures copyrighted and belonging to msgracewales unless otherwise stated.
