Living with chronic pain is like living with Dr Jekyll and Mr Hyde. For those closest to you they can be on tenterhooks first thing in the morning waiting to see if the sleepless night, medication, or the general frustration of relying on them to help you shower and dress means the beast has woken before 7am or will Dr Jekyll be there happy to see you. It really is like an uncontrollable urge that develops from deep within.
You either get a pleasant greeting as the morning coffee is passed my way or the more familiar grunt that tells you to leave me be for a little while. Let the meds kick in, the mood fog to dissipate and the ability to remain focused and in the room to return. There is all too often the sleepy, doziness that means you can lose an hour in the morning just trying to get up and in the shower. Having a shower itself is painful and by the time I am dressed the whole day and mood can either be positive or ruined.
You then have that battle of keeping Mr Hyde hidden for the rest of the day. If you are meant to be going out, or even looking at the weather and thinking lets make the most of today the battle to stop being a moody monster is intense. It is no good asking for Mr Hyde to make a choice or decision about what to do as that isn’t going to happen, an argument will ensue and whatever we end up doing my mood can be ruined.
If you manage to get through the morning routine with Dr Jekyll the day can start pleasantly enough, A kiss and cuddle with my wife before she leaves for work, watching Milkshake with my little girl and maybe doing a jigsaw puzzle sat at the table. Getting more than three words of conversation with my 18 year old son and the day starts well. Day’s like today when the weather is shining and you think I should be making the most out of it. Instead you end up being stuck indoors and despite the glorious weather and maybe a short stroll around the garden keeping up your physio exercise routine. By mid afternoon cabin fever is making the mood levels plummet and you start fighting off Mr Hyde again.
If you go on a day out with people around you smiling and making you laugh it is easy to replicate that, even as the pain levels continue to spike the laughter is the best medicine and you can keep Mr Hyde buried. Unfortunately he all too frequently comes out late at night when your mind is wandering, the house sleeps and you sit there thinking how much of a burden you are on everyone else.
You get asked to do things and you have to say no as the pain is just too much, you make plans weeks in advance and the mood, appearance of Mr Hyde and pain means you let people down and say no.
Even worse is you get asked to do something and you think yeah I should be able to manage that, or at least I’m going to try and pace the week so I can, but you do that thing where in your head you have formulated a response and replied to the message, text, email etc but actually you haven’t. Then three/four weeks later you realise sh!t I was meant to be there or doing that. This happened to me last night when some tweets appeared in my twitter feed and two students I had worked with were awarded by the college with achievement awards last night. One had contacted me and asked me to attend if I could and I had done the whole I have replied thing. Only to check LinkedIn yesterday and realise that I hadn’t replied (why there isn’t one social media, it would make it so much easier for Mr Hyde). Anyway I replied yesterday afternoon asking when the awards were and saying I’d like to set it as one of my small weekly targets that I have to keep going. I was looking forward to knowing when it was, but then I see all these tweets appearing in my facebook feed last night and I think oh fu@k I’ve done it again, I’ve let someone down. So last night Mr Hyde took hold about 7.30pm last night. I got to bed at about 1.30am and was up again at 3.30am as I could not get comfortable, I couldn’t switch my mind off and I couldn’t stop thinking that once again I’d let my students down! Even though its been nearly a year since I’ve been at work I still considered them my students as I’d spent a year getting to know them and supporting them and am proud of every single one of their achievements. It is going to make letting go of work very hard when the time comes, and I apologise now to my family and friends for the period when I become Mr Hyde again.
No one tells you that living in chronic pain will have such a profound effect on your mind, your life, your family, your friends (you find out who your real ones are so that’s a plus), your social life, your body, your confidence everything. As you can probably tell Mr Hyde is still fervently gripping me and as you let more and more people down, they stop asking, if they stop asking you stop asking, if you stop asking you quickly become a hermit, if you become a hermit everything changes. The downward spiral is complete and once you hit that helter skelter well fuck knows when you are going to get off it again.
The important thing is that you do, a little ray of sunshine breaks through the clouds and bam Dr Jekyll is back in the room. It can be as simple as your kids smiling and laughing at you, a friend calling out of the blue, an unexpected message.
What most importantly that all of you know is that if a spoonie ever lets you down, do not take it personally, do not stop inviting them out, do not assume what they can and cannot do, and do not above all else give up on them. They will want to know you are there for them even if you think we cannot understand how letting you down affects you, we do, just know that we do not do it lightly, we feel bad for doing it, beat ourselves up over doing it and sometimes push ourselves through the pain barrier next time just to not let you down again!