Today I had to let someone down. It is not something I like doing, nor something I take pride in, it simply is just something that goes along with the territory of living in chronic pain.
Over the last few weeks I have been unwell with other issues alongside the CRPS and Fibromyalgia. Issues that are no doubt linked to both of these but still need investigating by the medical profession. During that time I have continued to try to live life the way I have done for the last number of years, attempting to ignore the pain and these additional issues – believing that I could pace myself as I usually do, managing the pressures of everyday life without having any more of an adverse effect on me than usual. WRONG! Wrong! So very, very wrong! (shakes head at my own stupidity).
Through not listening to my body and continually pushing through I have become exhausted. Nope not the made up, all in my head type of exhaustion. Nor the kind of exhaustion that maybe I would have felt before becoming disabled, the kind you feel after working a night shift and still staying up in the day (yes, used to do this often, so know what this feels like). But the kind of exhaustion that comes with having a chronic illness and not stopping when being unwell on top of the chronic illness. The kind that takes a doctor to diagnose and say “STOP, enough is enough, if you don’t stop you are going to get worse”. Yep, I hit that point this week with the doctor wanting to sign me off work. Yeah right, as if that will happen, as if I will stay at home – I refused. MAD! Must be that is all I can say (and what others reading this will say too!). No, on a serious note, after discussing this with my doctor I was told I had to have total and utter rest at the weekend, my day off in the week, and at all other times that I am not at work and to see how I go. Any worsening of symptoms then I had to stay off work too and go back and see him.
You are probably wondering why I did not want to take the time off work, well for a start it is routine, routine is good for anyone, and is definitely good for me, it is better to have a routine than to not have one. Also it gives me something to get out of bed for, it is hard to get up, get dressed, do my hair at the best of times so I can be in work looking a little presentable and not completely dishevelled, but I see absolutely no point whatsoever of wasting precious energy and spoons on getting ready like this if I have nowhere to go. Plus I enjoy my work, I enjoy being there, I enjoy interacting with others, I enjoy the craic – if I did not go into work I would be at home, lonely, on my own, dwelling on the pain, medical problems and getting into a rut I really don’t want to be in, a rut that is really hard to climb out of!
The downside of making the choice to be in work, means I don’t have a choice outside work, especially at the moment with being unwell on top of being chronically in pain. Yes, I made the choice to be in work when I could so easily have taken the easy option and stay at home, so it is my fault I can’t do all I want to at other times for the moment – it will get better and I have to cling to that, look where I was 6 years ago when I started on this journey of chronic pain. My work is my sanity, is my normality.
Today, apart from the weather being absolutely atrocious so it did not blend well with what I wanted to do (more to come on this in the future, watch this space, or a space nearby!), I had to make the unacceptable choice of cancelling plans because of my health. As I said at the top of this post, it is not a choice I make out of fun, with ease, or with pride, but one out of necessity. I hate letting anyone down, or messing people about who have made arrangements, however sometimes I do have to say “no” and unfortunately this was one of those days. I don’t feel good about it, in fact I feel downright awful for cancelling but I had to think of me and my health. So I am truly sorry to the person I let down – if you are reading this then please accept my apology and I truly hope you understand my dilemma.
This is still an aspect of my disability that I completely struggle with, the very limiting effect that chronic pain can have on one’s life – the short notice cancellations, the long running planning to store energy, or spoons as I like to refer to energy as, and the recovery time required after doing something to restore energy back to “normal” levels (what’s normal with chronic pain). Those who know me in my personal life will know that I am generally a very positive person despite the adversity (well I like to think I am), so for me to be writing what I think is quite a negative post is quite out of character for me. It is a very important post to write though, because I am sure I am not the first to feel this way and will definitely not be the last. If my words can reach someone out there in the big wide World and make a difference, even one so small as “wow, that’s exactly how I feel” (I know this happens as it has happened to me reading other people’s’ blogs) then my effort at writing today has been worth every ounce of energy and not one single spoon was wasted! That made me think of the saying that goes with some TV programmes where they say “no animals were harmed in the making of this show” – well no spoons were harmed, destroyed or wasted in the writing of this blog, they may have ran away with the dish though!
I think society has a big part to play in the feelings of people with disabilities. Society’s definition of the “social norm” is to be everything to everyone, be able to get up and go at a moment’s notice, to be successful in your career, to run a house perfectly, be fit to attend social arrangements no matter what, and to just generally be able to go, go, go. It is very easy to fall into the mindset that if you do not fit this definition then you must be a failure and be totally flawed, it is also very difficult to get out of this mindset. It is basically an idealised picture of who you are “supposed” to be and is very damaging to confidence and your own sense of self-worth – I know this, as I have been slowly climbing out of that deep, dark, black hole – and what a climb it is as I usually take two steps forward and one step back, I have not reached the summit yet, simply because of the type of situation that happened today – this is a step back. However, I know that tomorrow I will step forward again, I might even do so today after writing this blog, after all writing is a great medium for putting things into perspective.
Being sick and in chronic pain all the time means it is very easy to slip into bad habits. It helps to focus on breaking these bad habits and by doing this you can start to make progress with climbing out of that deep, dark, black hole that you can find yourself sucked into. The kind of things to watch out for that are damaging to your self-esteem, self-worth and general well-being include the likes of:
- Overdoing it. The most absolute essential thing you can do for yourself is to pace; it can be hard to do, I find that I get worse if I do more than my body can handle – prime example is written above.
- Criticizing yourself. Give yourself a break, no one is superhuman, no one is perfect, wipe that notion out of your mind. You are sick, you have limitations, it does not mean you are a waste of space. When I find myself sinking into this abyss I focus on positive statements about myself – such as “I am doing my best, and as long as I am that is all that matters” or “I may not be able to this (insert relevant task) however I can do this (insert relevant task), as long as I am contributing something I am doing all I can do”. Just a sec though – YOU ARE superhuman, more so than a person not suffering with chronic illness – you must be to be able to live through the pain and challenges of being chronically sick – you are very brave and worth every single breath of air you take into your lungs – remember that!
- Blaming yourself. Your illness is not your fault – did you really want to be chronically ill, so ill that you were knocked out of the orbit of life – no! so don’t blame yourself, and certainly don’t listen to what some people might say – we have all heard them – if you got out more, if you tried this diet, if you exercise more, if you chopped off your leg, if you stuck your head in a gas oven, if you walked on your hands – the first comment sounds just as stupid as my last – and that is all these comments are – they are stupid. I know people think they are helping but they are not, don’t listen to them otherwise you will spiral into the blame game and you don’t want to be there. You are doing your best to make yourself as well as possible – why wouldn’t you – being sick is not a lifestyle choice and is certainly not your fault if you are sick.
- Believing other people’s negative opinions. I love this one because someone who keeps going, the best they can, through adversity is stronger and more capable than most. This is what you need to remember when others are negative about you, yes I know it will hurt when someone says you’re “lazy” or “crazy” or “worthless” or “shouldn’t be seen in public” – DO NOT believe them – you cannot afford to – believing negative opinions makes you angry at both yourself and the person saying them, which sends you straight back into point 2 (criticising yourself) and point 3 (blaming yourself). How can you be lazy when you are fighting sickness each and every day. You are certainly not crazy – your sickness is very real. You are certainly not worthless – revert back to last sentence in point 2! Why should you not be seen in public – you are beautiful (or handsome if you are a man reading this), and you are worth far more than the person who steps over you in your wheelchair because they are impatient, or the person that cuts you a filthy look, or the person who talks behind their hand about you – they are the worthless ones for not being able to accept diversity or value people for what they are, who they, and the way they are!
- Having unrealistic positive expectations. Whether this be of ourselves to be able to do something or of the medications or treatment you are currently using. Unrealistic positive expectations set you up for more than one step back into that deep, dark, black hole – they can throw you right back to the very bottom to start again. I know in the past I have put all of my hope and faith in whatever treatment I have been trying (having CRPS it really is just trial and error with treatment options because there is not a one size fits all treatment like most ailments) and have been majorly disappointed at not being cured. I now approach treatments with the attitude that any improvement is a success, and if I miraculously do get cured then that will be a big bonus – that to me will be like catching the fast lift all the way to the top of my deep, dark, black hole!
- Having unrealistic negative expectations. On the flip side of the coin, trying treatment after treatment without success can make you feel like nothing will ever help and could close your eyes to trying other treatments that might work. I know, you can feel like a guinea pig at times due to the one size not fitting all, and all decisions must be based on what you want and what is best for your body, however if you are offered something new don’t just say no, give yourself time to think about it. You can also have unrealistic negative expectations about what you think you can’t do – take a look at me – one of my biggest was believing I would never sail again after my accident – now look at me, in the summer I will be sailing a tall ship to Norway! Be prepared to give new things a try – you never know you might find your hidden talent!
- Putting yourself last. Learn the art of saying “no” – most of us will put all of our energy into the people around us, our jobs, our responsibilities and then find there is nothing left for ourselves. This will not work when you are suffering with a chronic illness, you have to take care of yourself first otherwise you will have less and less to give until there’s nothing left – because you will keep getting sicker. Ha-hum, I really must learn this one and fast – after all this is exactly why I was writing this blog post in the first place. I must remember to write my lines later – taking care of yourself is survival, not selfishness.
- Giving up too soon. It is so easy to give up and takes a very brave person to continue along a path that is difficult. If you give up too soon on something you can really miss out on the long-term benefits, or the fun you could have had if you had only just persevered. Easy to say, much harder to do when that climb out of the deep, dark, black hole is already a humongous challenge. Don’t let that stop you though – give yourself and your body time to adjust to the change – you are already strong for surviving with chronic illness so anything else is a doddle in comparison.
- Letting stress overwhelm your life. Stress – the bane of our modern lives – from keeping up with the Joneses to being successful to managing life with chronic pain – our lives are full of stressors. Stress just makes our symptoms worse. Not all stress can be eliminated but there are ways to cut down and manage the stress you are experiencing.
- Asking why. A big feature of anyone suffering chronic illness would be a small question (there would be very few people who would not have asked this question) – “Why” – Why am I sick? – Is it genetics? Your diet? Vaccines? Pesticides? Infection? Some sort of punishment? Treatment received? Why me and not the millions of other people? This kind of questioning will lead back to points 9, 8, 6, 3 and 2 – there is probably some elements of the rest in there too. What we need to be asking is “What’s going on in my body?” – this kind of question can uncover the causes of symptoms and may lead to you or your medical team finding a different treatment. Exactly the kind of thing I am currently doing with my medical team – trying to find an alternative way to reduce swelling when travelling instead of using an Aircast Boot.
Looking at this list can be very overwhelming and believe me I have not been able to do all 10 at the same time, in fact 6 years ago I could probably have only focused on one at a time. However, reading this list I can see that I dabble in all 10 in some degree or another, with number 7 being my worst to focus on. All 10 points were covered off on the pain management course that I attended 4 years ago, and it is not easy to get your head the right way round to be able to look at this list and work on eliminating the understandable bad habits that come with chronic pain.
I would like to thank The Princess in the Tower – for their fantastic posts on Facebook and for their brilliant website – they have helped keep alive all the hard work that I did when attending the pain management course. A lot of what they post was covered off in the 10 week course, which is not a long time to take in all of the valuable information and put it into practice. So it is good to have these constant little reminders and nudges to push me in the right direction. The numbered list above was taken from their Facebook post, however I have added my own little bit of a spin on it. If you have a moment why not pop along and check out the Princess in the Tower – it is not just for princesses, it is for all you princes out there too.