Monthly Archives: March 2012

Hey Genie

Oh Magic Genie in a Bottle-where are you? Why do you remain elusive? You would be so handy for day to day tasks. Sorting out the naughty boys from the nice. Making Jane Norman have a 95% off Sale as standard. Adjusting the laws of physics so the more Dairy Milk I ate the younger I’d look…

But I actually really could have done with you the most as I tentatively ventured back into the world and started my own Life After. When I’d spent so long away from the people and places and an actively well body, that I didn’t really remember what to expect or what was normal. I’d have asked you to make me a Magic List full of things that would come in handy for me to remember. Things that most people would think ridiculously unnecessary. Yes, clearly that would have been an awesome use of a Magic Genie Wish…

Since my Genie continues to be MIA, I’m going to assume that yours is too. So whilst it may not be magic, here is a list of reminders to keep with you whilst navigating the world after a few years out of it…

•It’s really normal to stay out of the house for the full day, people do it everyday without needing help, it’s normal for a body to be able to do it. I’d you can’t do it yet just keep looking for examples of it in the people around you-you will be joining them soon.

•People can and do walk miles everyday, thousands upon thousands of steps. It’s quite normal. You probably did it too. It’s quite normal to stand and walk for hours at a time. So expect to be able to do it.

•Eating at least 3 times a day is also a very regular thing. If you’ve recently started being mobile and you’re experiencing weird sensations you can’t quite place then it’s probably hunger. I know-weird right? I’ve been able to eat normally for about a year now and I still struggle to place the sensation of hunger after so many years of not feeling it. It might take a few months, but you will be able to eat like everyone else so expect it and enjoy it.

•Make plans. People plan holidays and weekends and evenings away. It’s very normal. Don’t be scared that by doing it you’ll be tempting fate and end up too unwell to go. You won’t. Everyone does it! Have fun!

•Meeting people face to face, it’s way more fun than corresponding virtually. Nothing wrong with people meeting online, but you’ve already spent so much time with physical barriers between you and the world. Leave it in the past.

•Shopping, in actual shops. You can do it, you know you can. It’s something that will make you feel so independent-and it’s so manageable. I still walk around supermarkets grinning like a lunatic because I can buy my own groceries and feed myself. It never gets old. It’s literally the best feeling I know. Don’t rob yourself of it by getting stuff delivered to your door.

•8 hours of sleep a night. I used to be quite obsessed with worry over sleep. So now I don’t even give it room for thought. I’m fine on a lot less, my body can handle it as, as can most, but it robs me off feeling less than 100% happy if I use it as an excuse to stress. So don’t you don’t either. Set your alarm get your 8 hours then get back out there.

•Things move really fast outside. Cars, bikes, runners, so keep your eyes peeled, stick to the far inside of the pavement. The least action happens there-if in doubt follow the octogenarians-they’ve always got it sussed…

I’m sure I’ve missed lots out. I’m sure the Genie’s Magic List would have been far superior. But honestly take this one with you. It might come in handy til your brain kicks in and reminds you of how things used to be.

Still properly wish I had a Genie but…

C xx

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Get Real

Actually Please don’t.

I struggle with the concept of Reality these days in all honesty. I used to listen to what everyone told me, did exactly as I was told, followed every step to its logical conclusion. Until that is I got sick and was told not to expect to get better. Yeah, had a bit of a re-think with that one, well you would wouldn’t you…

What really struck me as odd is that as I eventually started to get incrementally better I was discouraged further and further. Not to expect any improvement on the results I’d seen…only to expect a back-slide from where I was now. Don’t get my hopes up, be more realistic in my expectations. Set my sites on manageable goals. None of this was said to me out of malice of course, it was all to protect me from disappointment at a later date. But I’m really very glad I didn’t choose their idea of reality after all.

See as far as I can make out, being realistic in this sense means aiming for a result as similar to present circumstances as possible. And I didn’t want a slightly improved version of my life as it was, I wanted everything. Everything I’d ever had before I’d gotten sick, and everything I’d ever dreamt of having before then but told myself I didn’t deserve. I wanted it all and more besides. And I did get to a place as good as before I was sick, and I did surpass the life I’d had then, and I am still building a life that gets bigger and better everyday. And I’m not doing it from a reasonable or logical place, I’m just sort of feeling my way there bit by bit.

So please don’t get real, please don’t listen to anyone that tells you to expect average results from yourself. Please be your own miracle, be your own cure, raise your hopes and expectations as high as they will go and dream your way there. Make yourself so busy in your fantasy world of wellness that you don’t pay attention to the statistics experts are spouting in your general direction. Get yourself to an emotional state where you feel your wellness and feel your own power and your recovery is the most real and vivid thing in your life. More real than anything else going on around you. More dominant a feeling than the sensation of being pushed around in your chair or being fed by a carer. Make it your most dominant thought throughout your day. Live and breathe it until it feels more real than anything has ever felt. Make that feeling of power the only thing that matters to you everyday. No matter who you meet that tries to tell you otherwise.

 

The more delusional you can be the more I rate your chances of recovery. Trust me I know. A lot of people laughed at me on my way here, called me delusional, naive, childish in my approach… funny I don’t hear any of them laughing now…

 

Cxx

Check the Source

A wonderful thing that happens on any journey to wellness is a reaffirming of how lovely people truly are. How keen they are to see you get well again. So many kind and thoughtful people read or hear about cures and treatments and just love to pass this information on to whoever needs it. You might receive newspaper clippings from older family members, email links from friends, news articles from former work colleagues. It’s overwhelmingly generous, and sometimes yes, just plain overwhelming. because truly where do you start? How do you know who to listen to, who to trust?

At first I threw money at everything I could think of. The more expensive it was the more effective I thought it would be. I can tell you with hindsight I was way off with my thinking on this one. my cure was not cheap, but it was far from the most expensive thing I tried.

Then as my frustration grew I’d switch tactics to go with the treatments the offered the quickest results. I can also report this was wrong. It takes as long as it takes. Some people find a cure that takes months, some weeks, some days. The journey to wellness is not a sprint, it’s a marathon, I spent a lot of time putting the full emphasis on getting well, so much so I forgot about staying well.

There were treatments I was really interested in but was too scared about what others would think of me if I tried them. I had several people who really loved me go off on one when they heard about some of what I was doing. Now I realise it’s their fear not mine they have to deal with. But when you are physically and mentally at a low ebb it can be devastating to have to defend your choices, it can shake your confidence so much that you throw in the towel and just forget the whole thing. Any kind of confrontation can be very frightening when you are that ill. I’ll never forget that.

There are some things I wish I’d known then that I know now. So if you are still looking for your own miracle then please bear these little things in mind.

  • Keep Going. Please just keep going. no matter how crap you feel, no matter how much it feels like your faith is shaken and your heart is broken by disappointment. Because the last cure is always the one that works.
  • The weirder the cure and the more mainstream society objects to it, the more likely it is to be effective in my book. This is something I discovered myself through trial and error. If it’s something you aren’t comfortable with then just discard it.
  • Ignore statistics. You are not a number. I don’t care if it promises 95% success rate or 3% you are you, this is not the time to be comparing yourself to anyone, Especially when we are all still so in the dark as to why some people get well and some do not. Stick your La-La fingers in your ears and have a good sing-song if anyone tries to tell you what to expect percentage wise.
  • Expect a cure. Expect to get well. Expect success. Or as Henry Ford said “Think you can, think you can’t-either way you’ll be right.”

But perhaps most importantly Check Your Source. Is the person who is offering you this treatment walking their walk and talking their talk? Do they themselves have the kind of life you would like? Have they stood where you are standing now? Are they healthy? Are they happy? Are they positive? Do they love their own life? If the answer to these questions is yes then that’s all the encouragement I’d ever need. But if the answer is no well then I suggest you ask them to jog on and go straight to the next item on your list. And because people are so good and so kind there will always be someone eager to tell you about something you haven’t yet tried, never worry about that.

Cxx

The Best Bits

If you can get yourself through the first year of being back out in the world again I can promise you these are just some of the Best Bits:

Realizing that the stuff that used to worry you doesn’t even warrant a response. Try being scared of something like a lack of money after what you’ve experienced. The thought will make you laugh.

Not fearing illness because you know you got through it once and you’ll get through it again, only quicker this time and without even questioning if you can.

Feeling empowered in the knowledge that you do not need another person to provide emotional or physical support because it was you and you alone who got yourself back to where you are now.

Being totally present in the here and now because the past is definitely not a place worth dwelling on for any amount of time.

The unequivocable knowledge that even your worst day back in the world is better than your best day was out of it.

The look on your doctors face when they realize you’ve done what they told you was impossible.

Never ever being bored. Ever.

Appreciating that it’s not possible to get mad about the same things you used to-because you’re only ever 10 seconds away from perspective kicking in and showing you that all is well.

When a stranger accuses you of never having known a difficult day in your life-because then you know you’re not carrying your past around with you.

That feeling when you walk your first mile.

Finding out something new about this version of yourself that you’ve created by default. Over and over again. Even when you think you’ve discovered all you can.

Knowing that this really is just the beginning…

Cxx

Being of Service

After being housebound or chronically ill, returning to work can be a very scary prospect. For some it is the thought of being away from their Carer, or in a physical environment they aren’t comfortable with. For others it’s being around people after a long period of isolation. It doesn’t really matter what the issue is that creates the fear, because it always comes down to one of two things. Fear we will not meet the expectation of others, or of ourselves. That we will not be good enough, that we will disappoint. But there are definitely ways of overcoming it.

A lot of doctors recommend volunteer work as a gateway back into employment. Starting with a few hours a week and building up from there. I know people who have taken this route and found it very successful. There is certainly less pressure to perform if you aren’t being paid for your time, so the fear of not meeting an employer’s expectation is removed. You can control your own timetable and find a place close to home so there is less anxiety about the location if this is your main concern. All in all I can certainly see why it is such a popular route.

I have to say that for me the benefits of any sort of voluntary work definitely run a lot deeper than that. Anyone who has gone through an illness or physical trauma has had the very foundations of their life shaken. It’s hard to trust that the world is a good or safe place after something like that. It’s very common for people to resist creating their own Life After because who wants to willingly participate in a dark scary world where nothing seems secure or safe anymore?

Being of Service is an incredibly effective form of Healing. It’s like a set of lenses you can put on the world that makes it makes sense. Being around people who love and care for people they have no agenda with, getting nothing in return, that kind of love restores faith in humanity. It makes the world seem like a nice place to live in. And it’s a lot easier to motivate ourselves to get out there and actively participate in a world like that, than to discipline ourselves to learn how to exist in a world full of unkind strangers.

It takes enough physical effort to learn how to walk again, or look people in the eye and not be afraid, or speak to them and not have your voice and body constantly shake. That is a real and physically painful effort for many months. I know, I remember it very well. But it does not have to be an effort to get back into society. If you can deliberately look for examples of goodness, of kindness, of love, if you can find people and a world that you are excited about living in-even if you don’t yet believe you can do what they do, or can have what they have. If you can find anyway possible of finding those who Serve, and if you are able to, to join them and Be of Service to Others in a way that speaks to you authentically, then I can promise you that this is the Path that will lead you straight to a life you love unabashedly.

For me that’s what the real beauty of volunteering is, and any time I feel my confidence in myself is shaken -or the world I worked so hard to be a part of again -this is where I turn to. I ask myself who can I serve and how can I serve them? And everything else falls into place around me. I really hope you try it because it’s as good a start as any, and today is a good day to make that first move back into the world…

Cxx