Tuesday 22 September 2020

H.O.P.E - Hold On Pain Ends

Pale purple background. Photograph of a woman hunched over the legs in bed. September in purple handwritten font and then more text reading is Pain Awareness Month

Pain is unfortunately something I'm all too familiar with, I live in a constant level of pain on a daily basis; I can't tell you what it's like to be pain free anymore. Some days the pain is more tolerable than other days but it still affects me a lot in terms of what I am and am not able to do. 
Looking back I've lived with pain to some degree my whole life. As a child I was in pain a lot due to my spinal curvature. Often my pain then was dismissed as being 'just growing pain' rather than my pain and other symptoms being properly investigated and maybe if they had some of the diagnosis' I now have would have been given to me sooner maybe?
I take medication to manage my pain but it only brings my pain down to a manageable level to allow me to function on a basic level, but even then I am limited and still in some level pain and at times have to take extra breakthrough pain relief medication. I call my medication 'pain relief' because that what it is: it reliefs my pain as opposed to it killing and eradicating my pain. As well as regular and as and when needed pain relief medication my pain (amongst other symptoms) makes me feel constantly nauseous so I have to take medication to ease that too.
Pain comes in many forms: spasms, cramps, neuropathic symptoms like intense tingling/buzzing sensations, stabbing pains, headaches/migraines, gastrointestinal pain, stiffness, joint pain, torn ligament pain (often following a dislocation), sprains, acute pain, background pain, throbbing, tenderness, soreness, griping, generalised pain, - the list goes on.
Pain is something that is hard describe, especially chronic pain. Most people are familiar with the pain of a stubbed toe or maybe a broken bone but when you are relentlessly in pain throughout your whole body it is completely something else.
Being in constant pain not only affects me physically through my limitations - having to be careful for example due to the risk of exacerbating my pain or causing a joint to subluxations/dislocate or doing something that will increase my fatigue levels which doesn't help with my pain levels (as with M.E when I'm exhausted the Post Exertion Neuro-immune Exhaustion rockets up my pain levels) as well as avoiding things that will flare up a migraine. High pain levels are also a trigger for my non-epileptic seizures too.
My pain also affects me emotionally and every so often it wears me down to breaking point. There are many times when I have just cried because of how relentless my pain is especially when I have exhausted my list of pain management tools and I just feel like I can't take it [my pain] and my other health problems any more and I don't feel able to carry on.. Then it [the pain amongst other things] affects you socially. Many plans get cancelled or cut short because my body just simply has other ideas and seeing a friend even at home would be too much for my body to handle.
I've learnt to live with pain and when my pain levels are high often I've found that when I give my pain score I'm not as well believed because I'm not screaming (which would probably only exacerbate my pain) or having a complete breakdown. I've learnt that the best thing to handle my high levels of pain is to try and distract myself - easier said than done. I can tell you I know me and my pain well enough to know how best to handle it, but if I'm say for example in hospital and I'm in a lot of pain I find a lot of the time I'm having to explain and justify myself as to why I need high dose medications when I'm not screaming or having a meltdown. Those things just don't work. I don't take medication lightly but I know myself well enough for when I do need it and I will always ask for it to be stepped up.
I wanted to end this on a positive note as much as I can do when it comes to chronic pain. You can learn to live with pain and there are many things out there to try. Everyone's "pain toolkit" is different and what works for one person may not work for you and that's okay, it's just a case of learning what works for you. For me yes medication does help but I'm also a big believer in non-pharmaceutical alternatives to go alongside my medication. For example gentle movements if possible, my TENS machine, a hot water bottle, magnesium oil, massages, meditation/mindfulness, distraction, grounding myself amongst other things like using a wheelchair helps. I've also found pacing helps and setting a timer on activities so I don't overdo it and crash. helps too. I personally have a set schedule for the day alternating between activity and rest periods with times for meals, getting ready for the day and doing my main bit of physiotherapy and having this routine helps (I devised this with my Occupational Therapist in hospital). Getting a good nights sleeps helps too.

When you're in pain and it seems never ending, but remember the time when you pain has been at it's worse and even though it was really hard you managed to get through it.  H.O.P.E: Hold On Pain Ends  If you are struggling with pain speak with your doctor such as you GP or consultant as there are things that they may be able to do for you whether this be medication or making a referral to a pain clinic or for physiotherapy. You don't have to struggle alone.