Writing this post has been difficult; lately things have been especially hard so this blog covers a heap of things I’d rather weren’t happening as well as a series of negative opinions I’ve developed and am working hard to challenge and ‘unlearn’. This is by no means a ‘how to guide’ but more of an insight into how I am approaching life with a chronic condition/disability. Things I mention won’t be applicable to everyone but if someone could take away something from this, no matter how small, to help make their days a little easier I’ll be happy. So apologies in advance, this post is long winded and likely not an easy read at times (or a quick one)!
For the past three years I have been living with Cauda Equina syndrome and Complex Regional Pain Syndrome (as well as some other long term health conditions). I’ve written a blog post previously about the journey from eventual diagnosis to surgery so consider this post to be a follow on from that one. My condition has now meant that I have lost my job on the grounds of ill health and have been medically retired (thinking of retirement at 32 really does make me feel…odd to say the least).
Living with chronic conditions is hard, living ‘well’ with chronic conditions is even harder. Chronic illness can rob so much from you and your old life. It turns your world upside down and all you can do is try your absolute best to adapt to your new life and continue to live (not just exist).
Since diagnosis and emergency surgical intervention in December 2016 I had a brief period of ‘recovery’ during 2017, I still had no sensation in my left leg as well as the nerve damage, significant pain and bladder and bowel symptoms but things had seemed to settle somewhat or at least plateau. The sensation aspect of my lower organs and limbs never came back and I still required painkillers daily, but I adapted and learned to cope. I returned to work in a new capacity after being redeployed and had a great physical fitness plan to strengthen my weakened body and build up my self esteem again; even though this recovery was minimal it was workable. I was in pain but was managing it with low doses of painkillers. By December of 2018 my symptoms began to worsen again and I seemed to be steadily declining, In the January of 2019 I ended up in accident and emergency again fearing I’d had a relapse. This meant having more tests, bloods, scans all to find out there had been further disc herniation and nerve damage. Consultants were concerned but no concerned enough to surgically intervene at that point. So I was back to stage one again, the point I was at post operatively in 2016.
Over the next few months I continued to decline and was advised to go back to a&e by the specialist physiotherapist I had been referred to after the January as they feared there had been more disc movements. Again the consultants didn’t want to surgically intervene at this point. Since then I’ve been in limbo; I don’t understand what’s happening to me and there’s no definitive solution. I’ve experienced increased anxiety, low mood, crippling self doubt and fear for the future. I ‘lost’ part of myself after the initial diagnoses, I worked hard to build the ‘new me’ and felt more positive. This decline felt like a massive blow, I thought I was moving forward, getting stronger and finding myself again. Now here I was, in a position worse than before.
I’d struggled to find any positive aspects of myself. I’d lost my self worth; I couldn’t see why people would still want to be around me when I was this malfunctioning version of my former self. If I couldn’t like myself then I was certain others couldn’t either. All I saw were flaws; glaring, huge, obvious flaws. I couldn’t commit to plans because who knew if I’d make them? Pain and fatigue always got in the way, even if I could make plans and stick to them I spent the whole time being highly anxious and feeling like a burden.
I finally realised I needed help to cope with these feelings; my physical health and symptoms were being managed by a growing number of consultants but my mental health was not. I enquired about talking therapies (CBT and counselling) via my GP and was seen very quickly to start both lots of therapy sessions. This cycle of pain, anxiety and self resentment continues to this day despite having counselling and cognitive behaviour therapy but I have the right tools to help keep them in check. There’s also the emergency option of checking back in for futher therapy.
I never thought I’d rely so heavily on these sessions and had some views prior to attending therapy which were completely dismissed after the first session. Having a safe space to discuss these thoughts and feelings with an impartial person was so valuable. It was the freedom of non judgement that allowed me to look at ways to challenge these thought processes and damaging beliefs.
So what tools do I adopt in day to day life to help me live well and get the most out of each day?
Challenge negative thoughts using CBT methods
I ask myself ‘is this a practical or hypothetical concern’ in the first instance. A thought crops up and I sort it into either category; if it is a hypothetical concern I attempt to acknowledge the thought for what is is, just hypothetical thinking. So for example, ‘I think that people may judge me or make assumptions about me when I’m out and about’ this would fall into hypothetical thinking. It could happen in theory but there’s nothing I can do practically to address the issue at that time. I acknowledge the thought and let it pass (this doesn’t always work and in heightened states of anxiety it’s incredibly hard to acknowledge a thought and let it go. It takes plenty of practice and maintenance). If the thought I identify is a practical worry then I identify steps that I can take to minimise or remove the cause of concern. For example ‘I could fall when I go out’, in this instance I identify steps I can take to reduce my risk of falls; I make sure I have my crutches with me, I wear shoes suitable for the weather, I go out with someone else etc.
Always be prepared
Planning makes my life so much easier. Knowing plans in advance ensures I can be as prepared as possible for any trips/out running errands etc. Not being prepared makes me feel highly anxious and not having things I’ll need can make my life more difficult. My daily ‘kit’ contains sufficient medications for the time I’ll be away from home, my crutches, tiger balm for use in painful spots in conjunction with medication, catheter supplies for intermittent self catheterization and my phone. The more prepared for all eventualities I am the less anxious I’ll be about whatever the day throws at me. Preparation (and in most cases OVER preparation) definitely helps make the days easier.
Recognise limits and respect them
It sounds silly but knowing my limits really helps to prevent further pain or putting me out of action for days on end. I’m trying to get into the mindset where I allow myself rest and take time out. It sounds straight forward BUT I often feel overwhelmed with guilt and anxiety where I feel I’m not doing enough or I’m letting others down by taking rest time. I need to remind myself of the spoon theory a useful metaphor for chronic illness. Very briefly summarising, every activity has a ‘cost’ and as you only have a set amount of ‘spoons’ at the start of each day. It’s really about budgeting your time and energy effectively to get the most from your day whilst avoiding over exerting yourself and causing additional pain. It’s a useful metaphor to use in conjunction with CBT methods as, if like me you struggle with guilt and anxiety, you can challenge these negative thoughts to give yourself space to rest.
Don’t measure your capabilities to other’s
In an age where social media is a part of most people’s lives, it’s almost unavoidable to see other’s lifestyles, adventures and achievements. Whilst it’s great to see glimpses into other’s achievements and proud moments it can become hard to manage expectations of your own abilities when bombarded by images of celebrities and from social media accounts. The truth is it’s hard to manage your own expectations when you feel overwhelmed with guilt. It’s easy to focus on what you can’t do or struggle to do when you see these images but the truth is social media tends to only show the ‘good’ elements of people’s lives. People don’t often share negative posts just a filtered version of events. The same can be said for celebrity images; these images are often photoshopped or filtered. There are teams of make up artists, hairdressers, nutritionists and personal trainers working to maintain the image these celebrities. We need to be realistic about our own self image, there are days when I don’t get dressed and stay in pjs, I don’t do my hair daily. There are even days when I don’t get showered because I have zero energy. I don’t have a team of people behind me managing my image, I’m an average person who just so happens to have a chronic illness/disability too. I don’t get to travel as much as I would love to so my social media feeds aren’t full of carefully planned exotic looking posts in faraway places. Still, it doesn’t stop the feeling of wishing I could be more put together, be able to ‘do’ more and be more. It’s at times like these that I need to remind myself of all the things I CAN do. In truth there’s lots of things I can do and do well so often it helps to spend a few minutes writing down things I’ve achieved, things I’m proud of or skills I have. Writing these things down tends to put into perspective my abilities and focuses on the positive. It reminds me to respect myself as a person. It helps me to reaffirm my belief in myself and drives me forward to keep achieving what I can when I can.
I practice gratitude everyday without fail, often when I get into bed but perhaps just a quiet 5 minutes during the course of the day reflecting. I focus on a minimum of 3 things I am grateful for over the course of the day but there’s a HUGE number if ways you can practice gratitude. They could be small and seemingly insignificant or bigger more significant events. Perhaps it’s gratitude for your loved ones or friends. Whatever you feel gratitude for just spend a little time reflecting on each point. Some people find journaling gratitude to be helpful as well or having a type of gratitude calender marking up points they wish to focus on throughout the month like these examples below ;
The process of practicing gratitude has been an extremely valuable tool in day to day life. Evidence suggests that practicing gratitude has a huge number of physical and emotional benefits (outlined below). Pinterest has huge amount of information on gratitude journaling as well as alternative methods to practice gratitude in everyday life (a quick search found most of the images contained in this blog post).
Recognise that coming to terms with chronic illness/disability is a grieving process
Coming to terms with disability and chronic illness is a grieving process with many stages which you tend to jump between never really reaching an end point. The Kublür-Ross model defines grief as 5 main stages and much like grieving the loss of a loved one, people with chronic illness/disability often grieve their former lives. Recognising that grief comes hand in hand with the dramatic life changes chronic illness and disability brings helps you to work through the muddle of feelings you find yourself having. The five stages are defined in the image below;
Knowing that you will move through these stages sometimes forward but often taking steps back will help you more accurately tackle feelings as you can (as I do) look up articles on the grieving process and see what is suggested to do during each phase. What works is truly an individual process so I can’t definitively say that one particular thing will work.
Loving yourself and showing yourself kindness
As hard as it can be on the particularly bad days to be kind to yourself it’s something that you should aim for. You don’t have to be extravagant in your kindness and it can be something simple but it should be something just for you. Here’s a few ideas of simple things you can try to perk up bad days (or even just something you can do on a regular day).
If you’ve got this far then thanks for sticking with me! I’d love to hear some of your suggestions on coping with chronic illness/disability if you feel comfortable sharing them. What I’ve shared here are a series of things I adopt in my own life to help me cope but I’m always open to trying new methods in order to make day to day life easier.
Thanks again for reading