You may remember that back in October I spoke about re-evaluating how I pace. I decided to go back to establishing my baseline, i.e. what I could do in a day without making my symptoms worse. I did this because I felt as though I had plateaued in my recovery.
I had reached a stage where I felt like I was taking one step forward, then one step back and getting nowhere. I’m not going to lie, at the time I felt like I was taking a massive step backwards. However, it was definitely the right thing to do and by going through this process I actually learned something interesting about what it takes to start moving forward again.
Going back to establishing my baseline meant that I literally stripped everything back and created a simple routine that I stuck to each day. I aimed to get through the day with at least 20% (if not more) energy left in my tank.
After a period of two weeks I had broken out of my boom/bust cycle. Even better, I felt like I was moving forward again. After a month I felt the best I had in a long, long time. I stopped feeling so ill and something strange happened- I began to feel well. Staying well within my limitations obviously played a big part of that but there was something in particular that I truly believed helped: I stopped trying so hard.
Recovery can feel all-consuming. It takes a multi-faceted approach and that means you can be thinking about multiple things. You are planning what you eat, taking supplements, ensuring that you get enough rest, thinking about the products you use, planning relaxation into each day, choosing the best exercises for you, moving when you can and pacing your activities… the list goes on.
Paring things back reminded me that recovery can actually be a lot simpler and that there is less thinking involved if you make things a habit. Although routine can be boring, there is a beauty to it to. The simplicity of having a routine stops you trying so hard. Everything that you do becomes second nature and you do it without having to think about it.
Trying too hard simply comes from the desire to get better. It’s what we want more than anything else in the world. The problem with trying too hard– and being so desperate for something to happen– is that it creates stress. You may not be consciously aware of it, but it will be there. Stress will undo the good work you are putting in. One of the most important aspects of recovery is staying relaxed about it.
I thought I was being relaxed about my own recovery, especially seeing as I made time for relaxation every single day. However, this underlying desperation to get better overruled my good work. I had an end goal in my mind that I was desperate to get to.
Focusing so much on the future was creating stress that I didn’t need. When I pared things back in October, I also made the decision to take things day by day; I chose to focus only on the present day. This, along with my routine, is what stopped me trying so hard and enabled me to start moving forward again.
I find the concept of trying too hard an interesting one. For years I would find myself trying things that others ultimately had success with, only to find it didn’t work for me. Now, I reflect back and question if I was simply trying too hard? Was I getting in my own way of feeling better? Perhaps it’s not what you do that’s the most important factor but rather how you go about it. It’s food for thought anyway.
Just as a final point, I feel it’s important to say that a routine is just the basis to work from. Life will get in the way– it always does– but if you have a routine established, it’s something you can use to get things back under control again.
Routines will adapt and change depending on how you feel and as you progress through your recovery. It’s also worth saying that even when you feel like things are going the right way, flare ups and set backs can still happen. Don’t let that stop you from going back to what was working for you– don’t give up altogether. The path to recovery is certainly not a linear one!
What do you think? Let me know in the comments below.
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Great post and perfect timing. I do have a routine that I follow every day, it’s so boring I could scream sometimes but it throws me off when it gets interrupted. There has been something niggling at me and causing me to feel stressed. Your post made me realize that trying too hard to feel well is part of it. It is discouraging to backslide. I just have to remind myself that even when I take a step back, it’s only temporary -I am still way better than I was a few years ago- relax and move forward. I am so glad you are feeling better. Take care!
Thank you Sue. Routine is boring and I can find days where I resent it. I have to remind myself that it is what is enabling me to do things that I was struggling with before. Also it’s worth remembering that it’s okay to step out of it to do the things I want to do. However, it’s my routine that’s the tool that prepares me for doing that and what gets me back on track after. So in the respect, I guess it should be celebrated 🙂 Taking steps backwards is always hard. It is frustratingly part of the recovery process and that’s the testing part. If only it was upwards all the way. Take things day by day 🙂 I hope you feel better about things again soon x
I am in the same boat as Sue. I couldn’t have said it better. The other part that really knaws at me is that I feel that I don’t have a purpose, I feel like my mind is wasting. I have been a registered nurse for 23 years. I have currently just started on LTD and “trying too hard ” for sure to recover asap because I want to go back to work. I don’t know if this will be a realistic goal, time will tell. In the meantime I just feel that I am wasting away. Your article was excellent and it certainly has had me think about “trying too hard”. I’m guilty. keep blogging. I look forward to reading your past and future blogs. Christine
I know what you mean about purpose. At the moment I see my purpose as getting myself as well as possible. That in itself is a full time job and it is worth taking time out to do it as hopefully it will mean I can get back to other things in the future. Work is the thing that has held me back- it’s why I pushed myself too hard for months. I’ve been desperate to get back to it. It was counter-productive and I feel I’ve kept myself ill for longer because of it. I’ve sadly come to the realisation that it’s not possible for me right now, but that’s something to go into another time- watch this space. I am glad you enjoyed the post Christine and that it gave you some perspective on things 🙂
Trying too hard is something I am certainly something I am guilty of. If I stick with my med protocol and rest/wake cycles I do much better. I want so much to be better and whenever I start to feel better I do too much and fall back again.
Thanks for a great post.
It is easy to overdo things on a good day. I think this an area routine can help with too as when you know what you can safely do in a day, it’s much easier to stop yourself from all of a sudden increasing things. When your activity levels are all over the place it can be hard to identify what counts as over doing it. Hope that makes sense!
I agree with you 100%. Once I got into my medical routine: I know what I have, what meds to take, doctors to see, etc. I have my “thing” down. Every I is dotted, and T crossed. Now I can live the best me I can.
The best me is being what I want to be, making my own choices. I don’t feel like living up to anyone’s standards but my own, and I have made that very clear to everyone in my life.
I have times when I have to go to bed, and that is what I am going to do. I have times when I want to go to the beach or Disneyland, and that is what I am going to do. The point is that it is MY choice, and I only live up to my own expectations.
I am not going to get “better”.
I have an incurable illness.
I am awesome.
Deal with it.
I have.
Well said Jules.
Hi
Can you give an example how your day looks like? Thanks so much!!
Hi Neha
I can indeed. I’m actually going to have a free PDF download that talks about my day and what I do, it will be for email subscribers. So if that’s something you will be interested in you can sign up here. It may be a few weeks until I get this written as it is something I want to put a lot of thought and detail into to help people as much as possible. If you want to send me an email to chat in the mean time and ask questions, feel free 🙂
Well done for bringing this issue up. I also find routine is very important & taking each day as it comes.
Thank you Maria. That’s exactly it, it helps so much doesn’t it?
so true donna! such a great blog btw, now following on twitter- would love to chat sometime as seems we both have the same approach to chronic illness!
I blog over at http://www.abalancedbelly.co.uk
Thank you! Will check out your blog. Feel free to drop me an email anytime 🙂
Thank you for this. I am recovering from back spasms since Thanksgiving and with a bleeding ulcer in my stomach that had me almost bleeding out and a hospital stay for almost 6 days. My spasm went away finally after another 2 weeks but left me really weak so I’ve been trying to get up every morning, shower, and do something around the house. It may be loading the dishwasher or cleaning the bathroom. But I’m like you I have a hard time not doing what I do when I feel good and letting others do for me these things. My church has provided meals, visits, and even cleaning my house. Now I’m gaining strength every day but I have set backs too. So thank you for this it helped prove to me there are others that have the same problems and experiences.
Sorry you have gone through all of that. Take it easy and rest as much as you need to, don’t push yourself to do things too quickly. What a wonderful support network you have, so pleased you have that 🙂
I love your post. I also focus on my wellness instead of my disease, as much as I can and sometimes I just can’t be positive. I am also at a place of creating a realistic routine for my days but it’s never been a place I am “not in”. Different days, weeks, hours, and triggers require different strategies. I have a general plan for the day but I keep in mind that my idea and my bodies reality aren’t always in synch. I have blogged about the need to understand this condition, to plan in advance, and to allow change with acceptance, not anger.
Thank you for being honest. It’s hard for us to admit when things don’t go our way; the pressure of getting better is enormous.
XX Lucinda
Thank you, Lucinda. I think it’s great that you also focus on wellness but you are very right in what you say. We are only human and therefore there are times when things get too much and we will feel sad and upset. I think it’s healthy to accept those feelings and to express them.
I find that routine to be really helpful but, of course, life isn’t perfect and we often need to adapt. I’ll check out your blog, thanks 🙂
You are so right when you say the pressure of getting better is enormous and often it comes from ourselves.
I put myself under enormous pressure. I am the main breadwinner in the house and I’m struggling with work. After my spinal fusion everyone kept telling me I’d get better and I was recovering from my operation but it took me over 2 years since that op station to get diagnosed with fibromyalgia. Since then I’ve gone from being super fit with a big circle of friends and an active social life and career to not even managing my housework, almost no friends and no social life. I am a very focused individual and even though I’m doing everything right even coming off all my meds and using 2 super fibro supplements plus clean eating, mindfulness yoga and meditation and changing jobs I still give myself a hard time when I have a fibro attack. It wasn’t until I read your article that I realised I’m stressing myself out because I feel I’m not getting any better. But I must be I’m back at work full time and I’ve not had a day off sick in over a month!
Thank you for sharing. I need to get out of this depression and realise I’m doing ok! I want to learn to love this illness.
Hi Maz,
It’s such a difficult adjustment and I can relate to a lot of what you say. It’s so easy to get wrapped up in trying to get better that we don’t realise how much stress and pressure we are placing on ourselves. That’s really positive to hear you are back at work full time and coping. It sounds to me like you are doing really well. The link you shared to your blog was unfortunately a broken link so I have removed it but please do share the correct link.
Recovering from a chronic illness is like juggling raw eggs!
The better we get at juggling/routine/pacing the easier it all gets. We start off just juggling a couple of eggs then move on to more and more as we get better at it. Sometimes life hits us with an extra egg when we are not ready but all we can do is pick up what is salvageable and get back to juggling what we know we can handle.
That’s a really good metaphor! Thanks for sharing.
Oh my goodness, YES!!! It’s definitely a good move to get a routine going. Getting out of that boom-bust cycle through pacing has helped me get my symptoms under control. In the first year when I learnt pacing strategies, I remember feeling well! For the first time in ages! (After cutting back all activity and taking regular rests though the day). Then I thought “I must be cured!” So I went back and did too much again, then the boom-bust cycle restarted. Ugh… That’s the hardest thing, I reckon: keeping your foot on the brakes, and keeping the routine going, once you start to feel sort of normal again. Slowly getting there!!!
It’s so easy to get carried away and do too much when we feel well, isn’t it? I think maintaining everything is key but as you say, keeping your foot on the brakes is hard. I am glad to hear you are slowly getting there and I hope you are able to get back to where you were before 🙂
Hi I realise this is an old post but…wow! Everything Everyone has shared has been so jaw droppingly accurate to my current situation. I lowther the fact that my routine is soooo boarding soooo mundain I am aware that trying to get back to being me is causing stress and unhappiness. It was such a relief to hear other women say it. Thank you.
An old post but one that’s still very relevant 🙂 I’m happy to hear you found it helpful to read the post and all the comments. It really does help to know we aren’t alone in this.
Thank You Donna!!!! When I saw the picture of you on your scooter with your dog it validated me in so many ways. I also have Fibro, multiple joint replacement, very disfigured feet that cause balance issues and much pain. I too have a scooter and it is the only way I can walk my dogs and get out and about to visit with other people here in town. I have been shamed publicly for using a scooter and explaining more than once that I try to manage my “on my feet” time to get as much as I can done and still be able to enjoy life. It is horrible and the pain is MOST OF THE TIME…thank you for posting this. As of right now I will worry less about what others think and more about what makes me have better days.
Hi Cindy, apologies for the very late reply as I stepped away from my blog for a few months due to being on maternity leave. I am so sorry to hear you have been publicly shamed for using a scooter. But I am happy to hear this post helped you to feel validated. Unfortunately, there are people who will never get it but you are right to try and worry less about them, as hard as that can be. I hope you and your dogs have been managing out for some nice walks 🙂