When your condition is worsening…

Unable to pass of the increase in pain since November last year as a 6-month flare-up, I’ve had to admit to myself that my condition is getting worse; the balance of pain-free and painful days is changing and things that were often not an issue are now regularly an ordeal (i.e. sleeping, getting to and from work and carrying stuff).

Coming to terms with this was a process and at first, it was pretty scary. I thought I wouldn’t be able to cope with the increase in pain, I was confused about why I was so tired all the time, I constantly questioned whether I really was in any more pain than before (which is both ridiculous and exhausting by the way) and I mourned activities that I could no longer participate in. In short, for a little while, it was shit.

Now and then it’s still shit, but I feel broadly at peace with it. I realise how privileged I am to have the mobility and freedom that I do, and I’ve tried to adjust my expectations so that I can cope with not being able to do things at the times when I can’t.  Life just takes more planning, and actually, that’s okay.

It’s easy to concentrate on what dealing with chronic pain takes away; it drains your energy, can rob you of your independence and make committing to anything fun fruitless and stressful. I get sick of taking what I believe to be a positive step forward in my recovery, only to then take three back. I am bored of sprains and strains and dislocations that never fully heal, putting a smile on things becomes a chore and oh good grief I get tired of trying to explain to relative strangers why being too bendy can be a bad thing (I’ve had this conversation with four separate Uber drivers over the weekend so it’s particularly raw). Collagen chat is banal for all involved lads, please remember that. One of the hardest things for me, is that it’s taken away my ability to run. I love running, I was good at running and running kept me mentally well. It’s like meditation for me, because I can’t actually meditate; doing nothing and general silence makes me agitated. I’m not able to exercise at all at the moment (well, I’m struggling to walk unaided), but if my hip stops sub-laxing, I should be able to swim, which is wonderful because I’m scared of fish. So yes, it’s easy to concentrate on what the condition takes from you.  

As loathed as I feel to admit it however, my condition has given me some stuff too, most notably a chunk of perspective. This sounds trite, but I have learned to really appreciate the time that I’m not in pain. I realise that pain-free movement is a privilege, not a right, and therefore I feel that privilege when I have it. I feel more robust; I feel strong in that I am able to handle my condition most of the time, and I allow myself not to be able to handle it now and again. I take better care of myself than I used to, because I have to. I ensure that I have plenty of time for rest, I eat well, I do my physio exercises and I’m trying to know my body and what it can and can’t manage. I’ve learned to say ‘no’ when I can’t, and I’m working on asking for help when I need. My condition is a part of me and while I don’t necessarily like it, I’m learning to accept it.

Part of accepting it is finding practical ways to cope, and I’ve had to change the way I do some things to adapt. They are:

·        Walking aids and painkillers, everywhere: My hip has dislocated and sublaxed over the last few months, and both times I’ve been at work without sticks. I’m getting a fold up stick to leave in my desk drawer at work, I have crutches at my flat (and in my parent’s house) and I have a walking stick I can fold up in my bag, in case I need it. This helps both me and my friend, who was forced to act as a human crutch on Friday, so I could get home. Everywhere I have a stick, I have a collection of pills, should I need them.

·        A big rucksack: I can carry everything on my back, it’s much easier on crutches. Tote bags are to be avoided, they fall off the shoulder, slide down the crutch and trip you / nearby pedestrians up. Obviously if you know you’re going to be in close proximity to someone you dislike, bear this in mind.

·        Keep food in the cupboards: I invariably decide what I’m going to eat about 20 minutes before I eat it, meaning that I rarely have stocks of food in my cupboard. This has had to change, as I am sometimes in a situation where I can’t get to the shops, and lord help anyone that has to interact with me if I’m hungry.  

·        Being realistic: I used to think of my condition as a series of injuries that I just had to get over. I’ve now come to view it as something that is here to stay, and that I have to learn to cope with. It may seem like a slight shift, but it’s transformed my approach and attitude towards my condition.

·        Scheduled rest: Yep, I’m not coming out on X night, I need to sit in by myself and watch Netflix for health reasons.

What are your tips to get you through difficult times? How do you recognise when your condition is worsening? As I learn more about chronic pain, it’s clear how personal all this stuff is and how much I have to learn about myself and my condition, especially as the parameters I can operate within are constantly shifting. I hate the phrase ‘journey’, but at times it feels like one and currently I’m on a Megabus to Middlesbrough (not Boro shaming, I love it, just it’s alliterative and far, and no-one wants to spend 6 hours on a Megabus), but things will get easier and my coping strategies will improve. In the meantime, I’m taking advantage of my work from home day by having a lie-in, putting a record on and drinking more coffee than is advisable.

Have a good day all! x

Author: Becky

Semi-successful walker, music lover, Ribena enthusiast.

2 thoughts

  1. Sending hugs ❤ It's so hard when you're young and facing issues that make you feel in crisis and at least four times your age. I find myself going into panic mode periodically when things get bad and thinking "how is this going to end?" It feels like it won't and that's terrifying. And then I have a good day and I think "okay, I can handle it." Then a bad day, and the fear comes rushing in. I finally spoke with my doctor and asked her to help me advocate for myself. It really helped me feel I wasn't alone in advocacy for myself, which helped. The trouble with EDS is that one issue in one part of your body can trigger wide-spread issues. It's hard for people to understand and so relating is difficult so we tend to feel pretty flipping isolated. I'm sorry to hear what you're going through. Know you are not alone and that your sharing helps others know the same. ❤ At the times we feel the weakest, we are often demonstrating enormous strength without even realizing it.

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    1. Thank you 🙂 Your message is so kind. It sometimes feels really overwhelming and you’re right – once something goes wrong it gets into a bad cycle and it feels like everything in your body goes into meltdown! You’re so right about self-advocacy. I need to re-register at a new surgery anyway, so that’s possibly a great place to start with my Doctor. I don’t think I’d even identified how isolating it is. When I’m in a bad way I consistently ask / tell myself that it can’t be that bad, and if I don’t understand why it is, how can I expect anyone else to? We get bad and good days, and I find it much easier to talk about it all on the good ones. Thank you for your beautiful words, they really mean a lot ❤ There is great strength in a community of people sharing ideas, experiences and kindness. xx

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