Living With Chronic Pain
This is my experience – everyone who has a chronic pain condition will have different experiences and different, personal, ways of dealing with it. There will be commonalities, but all I can depict is what I live. My diagnosis is spinal osteoarthritis, or degenerative osteoarthritis depending upon which GP you speak to. I was diagnosed aged 31.
Chronic pain is very different to acute pain. Acute pain is the type we all have, like headaches, toothache, stomach ache, pretty much anything-ache, stubbing your toe, or the type of pain that comes with an injury like a broken bone. It is temporary and will get better (although sometimes chronic pain conditions can be triggered or exacerbated by acute pain physical injuries).
Chronic pain will happen no matter what you do and is persistent. It is indicative of an underlying condition. My chronic pain is sporadic and I am lucky in that I am not in chronic pain ALL the time, and when I am it is at different levels on a 1-10 scale. I feel some level of pain about 90% of my daily waking hours (sleep is consciously pain-free), and for about 80% of that it is somewhere between 2 and 4 on the pain scale. About 15% of the time that skyrockets to between 6 and 8 and when I am VERY unlucky it is a 9. I have yet to suffer a 10 due to chronic pain, although have had bouts of acute pain at that level, most notably when I had gastroenteritis and was hospitalised, and when a mistake was made with my prescription medication for epilepsy and I experienced such excruciating head pains that my then-fiance and I considered eloping as we were seriously not sure I would survive to our wedding day. We thought I had a tumour or aneurism as the doctors weren’t listening to me about my sodium valproate side-effect suspicions. That is a different story, and I digress…
As to what it feels like – at worst it is as if the vertebrae in my spine are covered in hard spikes and are grinding against each other, sticking into the muscles around them. Normally it is a dull ache in the bones with corresponding muscular pain throughout my back. It can be difficult to hold my head up when the pain is in my neck. At best, it is merely muscular aches. I am almost always in a low level of pain but it is incredible what the mind can get used to. I don’t really notice it below a level 3.
So what are the effects of my chronic pain on me? Any plans I make are subject to last-minute cancellation. I have to carefully plan out my week; spontaneity is fun and I do try to keep some of the unexpected in my life, but that does mean I will be immobile and/or in pain thereafter. In the last week I managed to go out three nights in a row after work to spend time with friends who I hadn’t spent quality time with in a while. The whole weekend was therefore a write-off and I had to miss out on another friend’s birthday shenanigans.
I feel unreliable and I know almost everyone who has any form of chronic pain condition feels this as well. At some point, you will stop getting invites as people think you won’t come anyway. Not all people will do that, and many won’t even realise they are doing it. There may also be a touch of paranoia in perception, but it is this perception of unreliability that is one of the hardest things to deal with when living with a chronic pain condition. The reality is I am as reliable as I possibly can be within the parameters allowed by my chronic pain.
It affects my relationship with my SooterkinTM (parents – stop reading this paragraph if you don’t want to be embarrassed, skip to the next one). I cannot always be physical when I want to be; the spirit is willing but the flesh is wracked with ouch-y. I don’t mean merely sex; hugging can be a trigger, kissing can cause neck twinges, minutest of actions can have massive consequences. It is not possible to predict what might trigger, so even being able to be intimate may mean pain afterwards. That’s always worth risking though. Have you met my SooterkinTM? He’s the best…
Parents, come back in here. Apologies to all for the untoward diversion into soppiness. Moving on.
All of this I feel guilt about, although I recognise and understand that it is misplaced guilt. I can’t help it but I have learned to forgive myself for these actions. I also feel anger at my body and the pain that inhibits me. Again, I have learned to let go of that rage as it will turn in on me, the tension will cause the pain to extend and it is not helpful to either my mental or physical condition.
However, as anyone who has ever felt pain of any kind knows, it can leave you short-tempered, impatient and easy to annoy and upset. I will also often writhe around in an attempt get my spine to ‘click’ or to ease or try to find a more comfortable position. I feel nauseous when it is a 6 or above (as it is right now as I type this – I have had two of my prescribed painkillers and know I will need more). I cannot sit, stand, lie or remain in any one position for too long. I hear myself snapping at people (usually beloved SooterkinTM who never deserves it) and tears are never far from the surface. Guilt compounds upon guilt, but I know the pain will come, no matter what I do, nor is there anything I can do to cure it. Sometimes it is difficult and like many who live with chronic pain, I have clinical depression. The two do not necessarily go together, it must be said!
Painkillers help with the pain, but they also have side effects and I don’t want to build up a tolerance so I will only use them when the level is 6 or above. I have to balance my life and work holistically. I have a choice of walking sticks to help on the middle-worst days. There are some things I simply cannot do. I cannot vacuum or mop floors, I cannot do weekly shops by myself as I cannot carry heavy weights, I cannot dance the dance of the squat-party people as I used to, I cannot do weights at the gym (although I hadn’t done that for 15 years anyway), I cannot become a rower (although I never wanted to). There are so many more things I can do though, and part of dealing with my chronic pain is to concentrate on what I can do and not what I can’t.
The best thing I have ever done for myself was to go on a Pain Management Clinic CALM course at Lewisham Hospital. I had already set myself up in a regular exercise routine to strengthen my back (the advantage of having become a qualified Reflexologist meant I had a basic understanding of my anatomy and physiology and how to target particular areas to maintain optimum mobility; I was unable to practice because in a massively unfortunate turn of events, physically doing a session triggered pain). However, I needed help dealing with the psychological and emotional impact chronic pain has. I did not know how to balance at this point. I would push myself on good days which would make the bad days worse. This creates a massive peak-and-trough wavy line graph of pain/not-pain. I needed to learn how to keep the peaks and troughs within manageable limits. Its an ongoing process, I adapt each and every day, but I now have the tools to recognise what I am doing, and if I push occasionally, it is an informed choice to do so.
I have two mantras – “this too shall pass” and “motion is lotion”. The latter is directly lifted from the CALM programme, and means that I need to keep myself moving in order to be able to keep myself moving. Small, gentle physiotherapy exercises help immensely, as does the regular swimming programme I put myself on. All this still has to be balanced with the demands of a full-time job I am still able to maintain, and having a modicum of a social life because I’ll be damned if I’m going to give up having fun! The balance adjusts if, for example, I have to do some overtime. Extra work means I will have to miss out one swimming session or an evening out. If I go out twice in a week, it means nothing will happen in the weekend. Even with these plans, I will still find myself cancelling arrangements.
I am extremely lucky to have a very supportive workplace; my bosses often tell me not to push myself and worry for me. They knew about my condition before they employed me, and in fact I started off one day a week, building slowly to five. I’ve been full-time for 7 years now, with no problems. On average I only have to take 2 days off a year due to chronic pain. I am an exception to the workplace rule, sadly, and that is something which makes me very angry. Chronic pain can be managed with the support of a sympathetic workplace. It needn’t inhibit an employer from employing a potentially very productive person. Balance makes you very organised and great at prioritising, and there is nothing better for a company than a dedicated and loyal employee.
So, this is what it is like for me to live with chronic pain. It does not define me but it is a part of me. In many ways, I am actually grateful. I am more focused, because I have to be. I have a regular exercise routine and am physically healthier than I have ever been in my life. I have the most supportive and caring people in my life, because you quickly find out who cannot deal with you. I am now classified as disabled as I cannot walk distances on my worst days so have a Disabled Freedom Pass – yay, free travel in London! There is a lot to be positive about, and that is absolutely the most important thing in dealing with the pain, to remain positive. It takes work, don’t get me wrong, and is a constant work in progress, but what’s the alternative?! I still have a life to live and I’m damn well going to enjoy it!