Self Care When You’re Chronically Ill

Lifestyle Photo

OK, so I’ve been thinking about writing this for about a month or so now, I think I’ve been putting it off as I’d have to admit my health has been getting worse.  Don’t panic, I’m grand mostly but also kinda not.

My endometriosis has decided to up the ante, the shit.  I’ve had two rounds of laparoscopies in the last ten years. I’m glad I’ve only had it twice and massively wish I’d done more research and avoided it altogether. I’ve always had lesions and adhesions with my endo, but laparoscopies actually cause more adhesions.  Which makes sense when you think about it, they are after all scar tissue.  So recovering from surgery would cause more, right?

Since mid-March, my adhesions have become rather nightmarish.  I’ve had pain every day, some days are worse than others, it’s also impeding my ability to walk.  I was walking 7miles a day and then the next thing I know, I could barely walk the length of myself!

I had to take some drastic action.  I imposed a bit of a self-care plan to help my body recover, I think it might be useful to other folks.

Grieve

This is probably an odd one.  I think it’s important though.  I lost it a bit when I realised the full impact of what was happening to my body.  My pelvis has been freezing slowly for years, this was the first time I was starting to feel the actual meaning of it.  I struggled to walk, to get out of bed, to sit comfortably.  I’ve always been such an active person, that the thought of not dancing, climbing, doing anything I wanted with my body.  Well, it broke me a wee bit.  I cried off and on for about two weeks.  How the hell was I going to still be me that half of me frozen?   I talked to my husband and my friends and they massively helped me remember that there were so many other things.

Sleep

This one is important.  Your body needs sleep – although if you’re sleeping huge amounts, this isn’t necessarily a good thing either, speak to a doctor if you are.  I went back to aiming for a minimum of 8 hours a night.  I think I need this as standard, I was going on 6.5 or 7 and I was always a bit tired.  I gave myself a few weeks of slow mornings and getting more sleep and I definitely felt the benefits.

Nutrition & Exercise

No, not that kind of diet.  It’s more thinking about what I’m putting into my body.  I’ve been struggling with my weight for about 6 months with no big improvements and I’m now starting to understand why.  I’ve had some food tests done and it turns out I don’t have issues with gluten, I’ve issues with wheat!  Plus lots of other foods.  So the best thing?  I’m switching to more organic foods and avoiding anything ready made – this includes sauces, powders, all that kind of jazz – thankfully we don’t eat many anyway.  Don’t get me wrong, I’ll still have the odd day where I will eat all the junk, but I’m going to be more aware of what I’m eating – I feel better both mentally and physically.  Something I need to remind myself of when I’m having a shitty pain day and just want to eat crap.

For exercise?  Well I’ve discovered I can do pilates, very basic pilates but it still counts!  So I need to do that more, plus ballet!  These are both slow and controlled, so I can do them with minimal aggravation to the inflammation – unless I get carried away with myself.  I’m trying to strengthen up my body to help deal with the long-term impacts and to keep myself mobile.  I can walk a wee bit, even if it is slowly.  So I will try and go for a wee walk regularly.  Plus yoga!  I can do yoga with practically no ill effects!  Win!  It’s still part of my daily routine.

Fun with friends
Photos by Kaye Fordtography

Have Fun with Friends!

It’s so important to keep your spirits up.  Yep, life can utterly suck and it’s important to acknowledge those bad days.  It’s also incredibly important to talk to your friends, to make fun plans and try your damnest to do things.  It might be just having your friend over for a coffee, or recently I actually managed to go to a festival!  I may have sat down for most of it until the main act at the very end, but I got out of the house, enjoyed the sunshine and got to hang out with friends!  Yes it’s a struggle and it can be exhausting but the improvement to my mood from spending time with a few friends, it’s entirely worth it.

Small Wins

OK, I just talked about making plans and festivals, however, some days are just a no.  For me sometimes I’m just really impressed if I manage to shower and wash my face.  That’s a win.  When the pain zaps all my energy, I have to focus on these things. OK, I might make it down the stairs for breakfast, it’s when I make it back up the stairs again to work that I’m chuffed.  I might have to take a wee break or just go very slowly, but I still do it.  That’s what you focus on, the small wins and they are wins, don’t dismiss them.

Keep Moving Forward

Slow progress is still progress.  Some days I can feel entirely defeated, when I’ve been feeling OK for a few days and then I’m entirely wiped out.  Those days suck.  I have to remind myself that I’m still in better shape than I was almost a month ago.  That the improvements I’m making to my diet are helping.   It helps to keep me moving forward and to continue learning about my body and health and how I can heal myself naturally.  Plus it’s a great excuse to try new makeup and beauty products – things that are clean of pesticides and nasties, that are cruelty-free, any excuse…

Reef

Be Kind

The main thing.  Be kind to yourself and allow others to be kind to you.   I swear Reef were singing directly to me at the festival.  They sang “I’ve Got Something To Say”.  I leaned on my husband’s shoulder and we had a wee moment.  Top that off with “Consideration” and well we almost cried!  I nearly missed out on seeing Reef because I couldn’t face walking to the festival on Sunday.  A friend stepped in and offered to collect me and drive me, I could’ve been stubborn and said no don’t be silly – something I would’ve done in the past if I’m honest.  Instead, I thanked him for his kindness and took the lift!  I’m so pleased I did as Reef were awesome.

Be kind to yourself.  Allow others to be kind to you.  You don’t have to be strong all of the time.  It’s OK.

 

9 thoughts on “Self Care When You’re Chronically Ill

  1. Just came from the Facebook group purely because I am about to write something about self care etc. I too have endometriosis and have had 5 operations in 3 years! Ouch! This was a really good read and totally relatable. Mel

    1. Aw my lovely! It utterly sucks. I’m hoping never to have surgery again, it just makes me worse every bloody time. I wish I’d known, although on my bad days I struggle to convince myself I’m on the right path. Recommend reading Heal Endometriosis Naturally by Wendy K Laidlaw – that woman went through it all and more! Hope you recovering from your surgery well. We’ve totally got this and we’ll get stronger…and other cheesy poster quotes lol

      1. thank you. I am totally struggling and definitely going to get that book. I am mega into reading at the minute. Keep fighting and stay strong, Go have another operation because believe me 6 weeks after which I am just finishing I have hardly any pain. Its the anxiety that is killing me. lol. Also being ‘normal’ after so long is weird for me. haha

        1. Read that book and it might make you rethink the surgery, it really opened my eyes. Surgery definitely made my adhesions much worse each time, I’m so pleased I only had it twice, I dread to think how bad it could get – frozen pelvis is enough to be getting on with 🙂 I do remember from the surgeries that I’ve had, that I definitely felt better after the recovery, however, when it got worse again, it was worse than it had been before the surgery. I never realised until I dug deeper and as it turns out, the surgery makes endometriosis worse. There’s lots of good info on it, at some point some more research will actually get done into endometriosis and come up with a long-term solution. For me that is sorting my diet and managing my lifestyle better. I’m already feeling improvements. I’m not taking normal painkillers anymore, hoping I’ve not done long-term damage to my kidneys/liver from the decades of heavy medication! Onwards & upwards!

  2. That last line is so important. And yes, you do need to grieve getting used to changes in your body that limit what you are able to do… but I’m so glad that you’re able to find the positives, and that you have the support of your friends and family.

    Plus, you have the best hair. Chronic pain can’t take that away from you.

    xx

    1. Thank you! The pain won’t take away my fabulous hair! I’m with you on that one 🙂 It’s so true, having a support network around me has massively helped.

  3. This is such a great post Aine. I am really sorry your endo is causing you such pain. I have another friend who suffers with it and it seems crazy there is not more and better help for you by now. I hope that things improve for you soon.
    These ideas are all brilliant, and its a good reminder that even if you’re in constant pain, life goes on, and you have to make it worth it. In phases when my headaches have been really awful, I have struggled to be positive or to keep living the way I like to live, and I am pinning this post so I will have it next time that happens. And I’ll be sharing it with friends too. x

    1. Aw Anna, thank you and I’m delighted you found it useful. You’re right, you have to make it worth it. Pain can rob you of any kind of positivity, it can be hard but it’s definitely worth it.

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