Monday, 11 July 2016

5 things I've learned in 5 years of chronic illness



So last week marked 5 years since my world changed beyond recognition. But rather than crawl up into a ball and blub about it I have decided to try focus on the positives. Because believe it or not there are still positives. I have learned so many lessons in these past 5 years, and got to know so much more about myself as I've faced these challenges. I'm sure I could make a much longer list of things I've learned throughout this experience but these are the ones that I thought of instantly. And in all honestly my cognitive functioning is pretty foggy lately, so I'm lucky I've been able to write a post at all. Anyway here are the 5 lessons I've learned from being chronically ill for 5 years. 

1

You are far stronger than you will ever give yourself credit for

Most of us really don't know how strong we are until being strong is our only option. If you are a regular reader of my blog you will know of my mental health battles prior to becoming chronically ill. Because of that, I fretted so much about how I would cope when I received my M.E and later my fibromyalgia diagnosis. I thought I would probably fall apart. Losing my independence, my career, friends, all I'd trained for. It's true that you will grieve for your former life. But illness is consuming and life becomes about coping with what it throws at you on a daily or hourly basis. Whilst also trying to keep your sanity. And to be fair your pain levels under control.

 There are of course times when you can't hack the pain, when you cry at how the simplest of tasks has left you completely depleted. But on the whole you manage. You just do. One of my favourite quotes I like to use as a kind of mantra when life seems unbearable is: 'On particularly rough days, when I'm sure I can't possibly endure. I like to remind myself that my track record for getting through bad days so far is 100%. And that is pretty good.'

Cope with it one minute at a time and try not to let yourself get too far ahead of yourself, imagining the worst. That only adds more stress to an already stressful situation. Also the odd wobble, sobbing self pity fest is perfectly healthy. Sometimes it takes those moments of grief to actually make us appreciate just how well we're doing.

Source: Pinterest

2

Friendships may come and go but you'll learn who really has your back

This is probably one of the harder things to come to terms with. Especially when you feel you've done nothing wrong, except become ill. Which obviously is not your fault. It can be heartbreaking, because this is a time when you need people on your side. But it's the being on your side part that's important, if they're not making the effort to try find out how you are or have some compassion for what you're going through then it's clear what side they're on.

 It can be really difficult standing up for yourself and cutting a former friend loose. Obviously you then fear having no friends at all and making your world even smaller. So it may take time. But in time you won't miss them.

 I know in some cases friendships have fizzled out due partly to my own doing, and again I don't mean becoming ill. Rather, that illness does change you (and that is probably a whole blog topic on its own) you don't feel part of your old world anymore and as a consequence you can feel that you no longer have anything to contribute to conversation. "So what are you up to?" "Err nothing." And cue awkward pause.

The important thing to remember is the amount of friends you have is nothing in comparison to the quality of friendships. Cherish those that understand that making plans may come with conditions, and you may need to cancel them at the last minute, not because you want to but because you have to. That if you don't reply to a message straight away or read it but don't respond instantly, it does not mean you're being ignorant, or don't care what they have to say. Also remember that whatever people think they know and choose to judge you on, only you have the truth. And that actions speak louder than words.

Most of my friendships now are with people I've got to know through the spoonie community. They're my first port of call when I need help. It's strange because obviously most I've never met, but I don't doubt their friendship any less for that. It's what works for our current situations but it's more than illness that bonds us. I do often laugh out loud at an image in my head, that if I were to get married (to my imaginary boyfriend) of myself and a trail of bridesmaids rolling down the aisle.

3

That smiling and laughter are medicine for the soul

Simple, but true. When you get diagnosed with a chronic illness, as you can imagine, it's disheartening and like I said you do go through a grieving process. You wonder if you'll ever laugh or smile again. But somehow you do and hopefully you will smile or laugh at least once a day. My not so secret, secret is to focus on the little things. The fact you've took less pain medication today, you've seen the cutest meme on Instagram. Eat something yummy. Have a mini pamper session. Or put on your favourite TV show or film, even though you've seen it a thousand times but you know it will make you laugh. I've got to the point where if ever I need both my parents to help hold me up and support me to walk I start singing 'let's all do the conga,' because I'd rather laugh and smile at how grateful I am to have such supportive parents, than think this is so depressing.

I already have some blog posts on happiness, in particular my 'happiness is...' series if you would like some ideas. I hope to continue writing more on happiness, confidence and self worth soon.

Source: Pinterest

4

To grab opportunities and have adventures

Obviously this is something that is subjective to each sufferer because no 2 are alike and we are all affected differently or have differing life situations. It's true though that we all must learn to see that achievements are not just life's big milestones, but the milestones you achieve with your health. Getting downstairs for the first time in months, being able to concentrate enough to read a book, walking into a restaurant rather than have to be wheeled. These are no less worthy achievements.

My own personal experiences have shown me that every now and again if an opportunity comes along and I feel I could scrape by then I go for it. So far I am lucky enough that that has included some holidays and even an amazing experience of being in the studio audience of Strictly. You can read about these experiences here on my blog.

 Yes, there's a lot of planning involved and usually smiling through extreme pain. As well as the agony of payback in the form of post exertion malaise. But making new happy memories that you can look back on with fondness, will help you to cope on those bed bound days. There is no such thing as a break from chronic illness but every once in a while you can try divert your attention. Within your limits of course. Life is far from over. It's about learning to live in the moment, taking advantage of your better days. And ultimately, knowing that because there is no cure, that you cannot delay your chance at happiness, you must grab it as it happens. You can't put off being happy until you are better. You will only rob yourself in doing so.

5

That you will have a whole new self respect for your body

You'll learn to read it and continually self assess. As well as a whole improved view on body image, because you are no longer as wrapped up in what your body looks like and hating on it. But rather what it can do and how much it puts up with. You are now so grateful for it for surviving through years of pain and for the times it allows you to have little adventures. It deserves your love and respect not hate and disdain. As ever self care and having a healthy relationship with your body is about what you put into your body, as well as being careful how you treat yourself physically and mentally. Your body and you yourself are doing the best you can within these circumstances, so treat yourself with care and respect.


As I'm feeling generous and I believe it needs saying, I'm throwing in a 6th nugget of wisdom. And that is: Healing and recovery are not linear. There will be peaks and troughs, better times and worse times. Times you cope better mentally than others. Set backs and relapses. So, never beat yourself up that you are not progressing as quickly as you would like. That you could do something one day but not the next. Remember illness, especially where PEM is involved, doesn't work like that. Never, look at everyone else's achievements and feel inferior, because they are making their own path not yours. Rest when you need to rest, cry when you need to cry and move at your own pace. Celebrate each achievement and give yourself lots of credit and praise for them, because it's you that's doing all the hard work. And yes, putting up with a chronic illness certainly is hard work.

What are the biggest things that you have learnt from becoming chronically ill? Let me know in the comments.

Until next time
Sian
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