As myself and quite a few of my friends are having a rougher time than usual I thought it would be a good time to hit publish on this post. I hope it brings them a little comfort. Having a chronic illness you very often feel hope-less. As in despairing that life has dealt you a rough deal and that you are constantly at the mercy of your symptoms. You may at times also feel hopeless, in a 'why can't I do that?' kind of way. Especially with simple tasks. All I want is to be able to dress myself etc. With constant symptoms come constant reminders of the things that you can't do. You may spend more time on social media and see others statuses and photos of what they are up to and think to yourself I should be doing that. That's the life I should be leading. And a lot of time lying in solitude and quiet will give you time to ruminate over these things. Those shoulds. And it's those 'shoulds' that will bring us down. Like the quote below implies.
How do we know if life would be all candy canes and lollipops if we never got sick? Did we always think that the lives we led before were perfect? Or never moan? Of course we did. Only now we sadly have more to moan about. But I don't want to focus on that too much in this post.
When it comes to having hope as a chronically ill person the lines can often get blurred. You get into the habit of knowing that if you plan to do something you will have post exertion malaise, or payback as it is often referred to. And that becomes a part of your planning. For example I'm going to go to the shop today and then for the next few days I will be mostly glued to my bed. So we plan to keep those days as quiet as possible. Get extra help if we need to. That in itself portrays a hope-less existence. It's not I'm going to go to the shop and hopefully won't feel too bad afterwards. In some cases it is best to imagine the worst. And it's not hard to do if you just think of the payback you had after the last time you went to the shop. Then you know what you're more than likely in for. On the other hand however you could then be pleasantly surprised when you're not as bad as you thought you might be.
Then on the other hand if there is something that we want to do, again for example going to the shop. We will keep the days before quiet in the hope that we will have enough energy to be able to go. That way we give ourselves a better chance.
On a day to day basis you go into survival mode almost. A kind of "I'm used to this, this is my new normal." Just focusing on getting through each day or each moment as best we can. I often catch myself thinking if I should be doing more. Not activity wise. But reading more books about my illness, researching more therapies, making changes to my diet. A what can I do to help make myself better? Taking charge. It's rare I even go to the doctors anymore. Because I know there's not much more they can do. There is still so little information about this illness that there is no conclusive treatment. Nevermind a cause or cure. And I know that is all a part of acceptance but sometimes you just want better. And yes that is hope-less but the fact that we can still keep finding those good moments and pull ourselves through is a promise of hope that despite it all there is still good in the world.
I think hope is inherant in all of us. I especially think that the people I know that fight chronic illness on a daily basis are some of the most hopeful people I know. That might sound strange. But it's what gets us through each day. Even if we're not conscious of it. Hope is our protection of sorts. A barriar from despair stopping us from becoming deeply depressed about our situation. Because becoming that level of depressed is terrifying.
There are times when I catch myself going to text people to arrange something and then have to stop myself when I'm reminded of the inpracticalities. For example, taking my twin baby niece and nephew swimming with their Mum. I get carried away in how cute it would be and how the water would be good for me too. Then I think hang on, firstly, how would I get there? I can't drive. I can't even push my own wheelchair and often need assistance dressing. So I think that rules that out. I don't think she'd manage with twins and a grown up baby in a chair. But the fact that my brain will let me think like that, if only for a second shows hope.
When thinking to the future I am often caught by suprise by how naturally I think of myself as being healthy then. Of having the energy and health to be living a full life. Or life to the full. A life that may differ from what it was before becoming ill, when I thought I was living life to the fullest. A life where I will savour the smaller moments more because I know their true worth from this experience.
To my poorly friends, keep fighting in your own way. Take each day as it comes. And keep hoping, you wonderful, wonderful people.