Happy nearly 2015, everyone.
It has been a long bloody year. Actually, it seems to have gone insanely quickly.
I’m really excited for my little holiday tomorrow, and I am very much looking forward to having a break and doing a bit of exploring. I’ve been promised it is magical there this time of year, so I have high hopes.
Before I go, I just wanted to write down some important things that I’ve figured out over the last year when it comes to living with, managing, and trying to cope with a chronic illness that seems to be taking more from me every single year.
I don’t think I’m unique in saying that there is a point when all the meds and lifestyle adjustments that have been recommended haven’t worked (for me, anyway) and you’re kind of just left to figure it all out for yourself. Unfortunately there aren’t really those systems in place to offer the continued support that most of us need. More often than not it feels like “well, nothing we know works, so off you go. Good luck!” This can feel very scary and isolating and make it difficult to figure out what to do on the good days as well as the bad.
This year didn’t turn out quite the way I hoped. It started off great, in Morocco. But when I returned I realised I couldn’t go back to work. So I took off a few months, rested and then thought I was well enough to go back. I really, really wasn’t. It was incredibly upsetting and difficult. But those tribulations have made me realise a lot more about the way I live with and handle my health. I thought I’d share some of the main lessons with links back to relevant blog posts that you may find helpful to read going into 2016.
I also wanted to say thank you for all your lovely comments, emails, tweets and Facebook messages. Sorry if it has taken time to get back to you (and if I haven’t replied, I’m sorry, it may have got lost in my inbox). I honestly never thought I’d have so many people reading my blog and I’m really glad that what I say resonates and can be of even the tiniest bit of help. Although I never expected to get so many emails saying that my blog made you cry! Here’s hoping for some more laughter and a better year next year. Oh, and before I go, if there’s anything that you would like me to write about, please pop a message below or message me and I’ll see what I can do. I’ve got a few more ebooks planned that I can’t wait to share with you.
1) Diet isn’t everything
I know I haven’t written so much about diet recently, and there’s a reason for that. I won’t go over all the details again, but I think it’s important. When you’re chronically ill, eating a healthy and balanced diet is vital, more so depending on sensitivities, mast cell problems, gut problems etc. Unfortunately, along with many people, a few years ago I fell into the social media trap of wishing and hoping that diet was my silver-bullet, that it was going to make me better. Thanks, media. And for a time I did. Of course, going from being full of meds that made me sicker to no meds as well as going from innumerable grilled cheese sandwiches to a healthy diet is going to make a difference. I still maintain that diet has helped a huge amount with my mast-cell problems, and I still believe that being mindful of what I eat is one of my most important management tools. That being said, I’m no longer under any illusion that diet is going to ‘make me better’. I’ve been at this for years and have only gotten worse. I don’t believe that obsessive restriction is healthy, even when you’re doing it for health reasons. It’s all about finding the balance between brain happy and body happy as much as possible.
5 Ways I Try To Manage Balance With Chronic Illness
The Balance Conundrum
Why I’m Over The Whole “Wellness” Thing
2) Looking after myself has to be my full time job
This has probably been the most difficult thing for me to accept. I am number one. Well, I’ve always known and believed that…but this is more in the sense of my health. Nothing is more important than my health. Not going on holiday, not going to work, not going to dinner, not watching a film. I have to listen to my body and make sure I am doing everything that I can to try and feel as good as possible. Of course, this can be hard when you feel permanently crap, but it works in degrees, right? Make the most of the good days without pushing yourself too much to cause too many bad days. Finding ways to stay positive and keep going when the future seems scary and pointless, learning that practicing self-care isn’t lame, and realising that that is ok. This is probably the thing I need to work on the most still.
I’ve Just Realised That Right Now Looking After Myself Is My Full Time Job
I Think It’s Time For A Reality Check
Why I Set Myself Weekly Challenges
Getting to grips with ‘true’ resting
3) It’s ok to keep trying new things, even if they don’t work
If you’ve been following me for a while you’ll know that I’ve stopped and started a tonne of things this year. I went back to work. And then I stopped. I took a coding course with General Assembly. And I stopped. But these were because they weren’t suitable for me. It’s really important to remind yourself that if you need to stop something, it’s not because you don’t want to, you’re not dedicated enough, or you’re lazy. Again, as I said above. Nothing is worth making you sick for. But I try to look at what I want to do and find compromises. So I’m learning to code from home, I’m studying my LLM from home. Any work I do will be in a place that is understanding and flexible and definitely not even thinking about full time at the moment. If something doesn’t work, it’s ok to feel sad about it, but pick yourself up and try and try again. Remember, on some days just having a shower or making yourself a cup of tea is a huge achievement worth celebrating. But you can never stop trying.
Coping with what feels like “unfulfilled potential”
(Trying) To Plan For The Future With Chronic Illness
Welp, looks like I’m a student again!
Desperation, “Miracle Cures” & Hope in Chronic Illness
Life Without Exercise, Beginning Barre (Or My Journey To Becoming Graceful) & Walking
4) Opening up and being honest about your health is super important
I totally and utterly understand that some people aren’t as comfortable talking about their health with other people as I am. Please remember I’ve been sick for 20 years so I’ve had time to get used to it. I realised a big part of it is societal, that I was embarrassed. But now, I just think ‘fuck it’. Explaining and having people understand (as much as possible) what is going on with me means that I can get more help and support and enable me to make the best decisions I can on a day-to-day basis. I’ve literally lost my filter about it now. It’s rather hilarious.
For family and friends who “don’t know what to say”
Why I choose to write about my health
How Being Honest Changed Everything
On Body Image & Chronic illness
6) You don’t have to be positive all the time. It’s ok to say this sucks
There’s this weird phenomenon on the internet, and it’s a huge part of the whole ‘wellness’ scene, of unquestionable positivity and that you can think your way out of any problem if you want it enough. Firstly, let me say that I totally appreciate and agree that finding ways to stay positive are extremely important. I’ve been struggling with that a bit recently, but it always comes as a result of worsening health. We all have different coping mechanisms, and finding what works for you is something that I highly recommend you explore. That being said, fuck that shit. Anyone that thinks that you can magically ‘positive think’ your way out of chronic illness needs a massive slap across the face. It’s the implicit implication that you’re either ‘not trying hard enough’ or don’t want to get better enough. Lol. Have they met me? Because if they do they’ll get a slap in the face. Of course, there’s an element of personal responsibility, but that comes into things like diet and lifestyle considerations, not in terms of ‘curing’ yourself. It doesn’t quite work like that, and it’s getting harder and harder to avoid this weird ‘victim-blaming’ (no I don’t consider myself a victim but it’s the easiest way to describe it) woo. You’re entitled to struggle and be sad about that struggle. Saying that you’re grateful for everything and that it’s all fine all the time is disingenuous. Don’t let anyone tell you you’re not allowed to feel your feelings. The trick is not letting them get the better of you for too long.
My body is crashing. I didn’t know what to do. So I’m writing about it.
Invisible Illness Awareness Week: Random Observations From My Life With Chronic Illness
My Body Is Freaking Out & So Am I
Well, that’s about it from me this year. I’m off on holiday and will be back with more in 2016. Thank you again for all your support and for sharing my day-to-day ups and downs. I hope you all manage to have a lovely celebration and that next year looks up for all of us!