This article has now become a work in progress and is constantly evolving
I am writing about pain and what it means to me. How it affects my life physically and emotionally. Also how it affects the lives of those who suffer from it.
This is how pain is described in the medical sense:
“Pain: An unpleasant sensation that can range from mild, localized discomfort to agony. Pain has both physical and emotional components. The physical part of pain results from nerve stimulation. Pain may be contained to a discrete area, as in an injury, or it can be more diffuse, as in disorders like fibromyalgia”
Some break Fibromyalgia pain down into seven varieties: hyperalgesia, allodynia, paresthesia, muscle and joint pain, headaches, and abdominal pain. How many of these one has, and to what extent, varies widely—and this can change over time. Which is certainly my experience.
Pain wins many battles, it’s not going to win the war. I simply will not allow that.
Pain has made me who I am today. A strong woman, that doesn’t give a f*ck, carries on regardless the best way I can. It has brought me friendships with people I may not have never known otherwise. It has taken so much from me but it has also given me so much.
Chronic pain is my permanent stalker. It’s like this big, black cloud that hovers over me. I never live a moment without it. It’s there when I wake up and it’s there when I go to bed. It keeps me from sleep and it wakes me in the night.
There are many ways I try to fend off this horrible stalker that continually lurks behind me. I have a complete arsenal of potions and lotions to fend off its advances; Pain medication, CBD in many forms – Oil, patches, gummies, capsules, and balms. I also use things like pain-relieving gel, Deep Heat, Deep Freeze, Magnesium spray, hot water bottles, and long hot baths.
Pain is a thief, that continues to steal from me. It steals time with my children, time with my friends, and time to do the things that I enjoy. It not only decides every day what I am capable of doing. It steals from the days following if I manage to force myself to do something despite my pain. It wreaks revenge the following day, sometimes days, sometimes weeks, sometimes months. It causes me to grieve the person I once was and the person I wish to be.
This time 2 weeks ago I was on a family holiday to the Island of Sanday. 4 days of outings, beach visits and walks left me not only exhausted but pain-ridden all over my body. My pain has been magnified simply because I decided to enjoy myself for a few days. It was worth it though. I got to spend some quality time with my 2 boys. I have no regrets. I just wish that I didn’t have to pay for enjoying myself. How long will it be before I fully recover? That is always an unknown.
Quite often I am thankful for the person that pain has made me. I have always considered myself to be an empath. Chronic pain has grown my empathy towards people even more than I was before I began to suffer from it. You should never judge anyone. You have no idea what someone is truly going through. I choose to be kind and remain kind despite the way I have been misjudged and badly treated by others. It serves me well. Some may view it as a weakness, it’s anything but. My kindness comes from a place of strength.
I have met many inspirational, kind, genuine people along my Fibromyalgia journey. People whom I’d have never have met otherwise and for that I am thankful. They pick me up when I need it and I do the same in return. We are a community full of beautiful people and I believe that we should all support each other in whatever way we can
The effects of Chronic Pain
Your mind and body are not designed to withstand being in pain for a prolonged period of time. Therefore chronic pain, which lasts for 3 months or more, can take its toll on the mind and body. It can effect your mood, sleep, memory, concentration and your relationships with others.
Low mood, anxiety and depression
One of the biggest impacts chronic pain has on our brains is how it affects our mood. Being in pain on its own can be taxing emotionally, but when you pair that with the effects chronic pain can have on our lives, it makes it almost impossible to function “normally”
Being diagnosed with chronic pain and knowing that this pain is not going to go anywhere quickly, can be a really difficult concept to come to terms with. Stigma and lack of education often means that medical professionals and society imbed beliefs within us that ‘chronic’ means forever, and that you are always going to be in pain. This is an understandably terrifying concept. One that I haven’t yet come to terms with myself, even after 10 years of living with it.
Chronic pain can feel like all the joy has been sapped out of your life. Even when treated, functioning can be reduced. Many people are left no longer able to work or keep up with the hobbies and activities they used to engage in before they were chronically ill. Relationships with friends can slowly drift away as people become impatient because you aren’t getting better. This can be extremely devastating to ones mood.
On top of that, not being able to work means that financial worries come into play. Concern about pain can induce anxiety and yet more stress. Social isolation results in people feeling that they are alone in their struggles which contributes to a drop in mood.
Chronic pain doesn’t only affect the individual, often family have to take on a caring role. Having to ask for help and loss of independence can result in the person feeling embarrassed, guilty or like a ‘burden’. I constantly feel like a burden to those closest to me and like all I do is continually let people down because of the constant cancellation and rearrangement of plans.
All of these factors can cause stress and anxiety, lower mood and often result in mental illnesses. Depression and anxiety are extremely common in pain patients, with up to 85% of chronic pain patients being affected.
These mental illnesses can contribute to worsening pain and other symptoms. The emotional impact of chronic pain is so severe that pain patients are at a higher risk of suicide. In fact, chronic pain patients are at least twice as likely to have suicidal thoughts or behaviours than the general population.
British Pain Society
The British Pain Society has instigated research that has revealed truly astonishing results. Chronic pain affects more than two fifths of the UK population, meaning that around 28 million adults are living with pain that has lasted for three months or longer.
The authors discovered that 43% of the population experience chronic pain, with up to 14.3% living with chronic pain that is either moderately or severely disabling.
If a 5th of the British population suffer from it why is there such a negative stigma surrounding those who do?
Chronic Pain described by people who experience it
My pain is a demonAnon
P.A.I.N.S- Positive Attitude In Negative SituationAnon
Pain is a thiefAnon
Pain is my stalkerOrkney Fibromyalgia Sufferer
It means fidgeting to get a “comfortable” position whether in bed or sitting. Holding onto something when standing, every action being carefully thought out to minimise pain. Being scared someone touches you and it’s agony. Light and noise hurting and the emotional hurt and pain from not being taken seriously and all the things that I’ve lost through this illness.Dawn Hossack
But, I also discovered who my real friends are. The people that count and a wonderful community of support from this group so I also feel very blessed” “Pain to me means a fight a battle a victory won each day , it won’t get the better of me and rob me of my essence my soul and the things that make me , me ,
It also means sadness , guilt and anxiety , for the things I can no longer do , guilt for the times I have to rest when I have a family to care for .
Anger at it I get so angry not woe is me just angry at it for showing up and sticking around ! But pride in myself for fighting it x
Pain sucks the life from me and leaves me broken and worthless on the floor. It never leaves me, it makes my very skin scream. Pain lights a flame thrower that burns every inch of my body. And Finally pain kicks me all over wearing hobnail boots till even my soul is bruised. That is what pain means to me” “Pain to mean means missing out on life. Having to stop doing things that I enjoy. Being jealous of others who get to walk through life without this sufferingHeather
Pain for me means sleepless nights & total exhaustion 24/7. Not being able to do any of the things I used to love. It robbed me of my career, my income, my friends, my abilities, my energy, my sense of humour & my independenceAnon
Pain for me means judgement from others , arguing, uncertainty .Being unable to concentrate, sleeping when I want to be awake and being in pain when I want to sleep. Most of all pain means always feeling guilty and saying sorry for not being the person I wasPauline
Have only experienced chronic physical pain in my life once after recovering from an accident. Where physio & hydro became my world for several months and I wonder what elements of my life I would have to negotiate if the experience continued. I lovingly named a hot water bottle due to the level of gratitude I felt towards its existence! I consider myself to be humbled by that experience of pain as I know this was such a short term experience to what I could have experienced and to what others in life can or have to endure. The journey with pain can also be a confusing one because parts of it can take away, frustrate / break you but other parts can transform & restore.Reannon
There so many forms of pain as well so uniquely layered such as the pain of bereavement, surrendering to life, the pain of not wanting others to feel pain. The pain of being misunderstood, the pain of not being accepted for who you are; theres so many varying forms when asked about your personal experience of pain
Pain means that I am alive and have much to be thankful for 🙂💝Anon
Pain does not define me. I am unable to stand most days, but I am so grateful to be able to open my eyes each morning.
You see I am not just “my body” I am not just “my pain” I am so much more than that…
And whilst I am able to feel pain…I am at least alive, so however the day goes.. is up to me and how I choose to spend each lovely new day..is also up to me ✨
Pain Unable to meet and talk to people, Unable to walk without sticks , Sleepless night, It has affected my balance , Sometimes I wish I was deadRobin Mabbott
I would be interested in hearing, what it means to you and how you would describe it.