One of the hardest things about a chronic illness is helping those around you to understand how you are feeling.
Because of the nature of chronic illness the symptoms can be variable and this makes it harder for people, who have not experienced it, to understand.
As an Osteopath, and recovering chronic pain sufferer, I can understand it both as the patient but also from the point of view of trying to help people to recover and live their life fully within their individual capacity.
I have spent several years of trial and error to come to a much better understanding of chronic illness and the tools that can help improve the condition. Having people around that 'get it' can make a huge difference so here are some things it is helpful to know.
Chronic Illness is very complex.
It can have a multitude of symptoms: pain, extreme fatigue, headaches, brain fog, nausea, insomnia, dizziness, anxiety and sensitivity.
The symptom pattern can change day by day or hour by hour and a 'Really Good Day' may be a non-sufferer's really rough day.
Pain and Sensitivity
The pain can vary in intensity from mild to severe. It moves around the body and its pattern can change daily...or hourly!
It can be back pain, neck pain, limb pain, jaw pain, abdominal pain and headaches. The pain is REAL. It is processed in the brain and in chronic pain conditions it is on overdrive which is why some days it can seem like even your hair hurts. The pain reaction within the body becomes hugely heightened and sensitised. The other senses become reactive too. The smallest amount of light from an LED light at night can prevent sleep. Sudden noises seem like a bomb has gone off and even listening to the radio is too much. A room full of people can be completely overwhelming.
Often in chronic illness there is also crushing fatigue. This is not tiredness; this is the tank is on empty and the next fuel delivery date is unknown. It may be later that day or in 3 days time. With this fatigue, energy supplies have to rationed so if there is something on later in the day, the morning may have to be spent resting. A day out can result in several more trying to recover back to an even keel. There is a wonderful story about spoons by Christine Miserandino where she describes her energy levels with chronic illness. It is well worth a read here...
Cognitive dysfunction is common in chronic illness. It can particularly affect memory and recall and means even simple things get forgotten and reassurance may be needed due to doubt.
Sufferers don't want to be ill and being unable to work is no holiday
Many people struck down by chronic illness still want to be active and want to get on with their normal daily life and hobbies but are not able to. They are often high achievers and it can be a long time until they can accept that there is anything wrong because they are 'soldiering on'.
Some sufferers become unable to work and this then has implications financially which may cause added anxiety.
The general over-sensitisation of the nervous system can also lead to anxiety and panic as the body is on high alert the whole time.
IBS and Food Sensitivity
Often chronic illness is accompanied by irritable bowel symptoms that may or may not be related to food sensitivity. The irritating part is it is often not consistent; so one day it may be that wheat appears to be an issue but is fine the next day when dairy takes over.
If you want to put yourself in someone with chronic illness' shoes...
Imagine severe back pain with a migraine type headache and add to this severe jet-lag type fatigue with a bout morning sickness thrown in for good measure.
Then add to this the feeling the body has just after it has had a massive shock and is left all jittery like a rabbit in the headlights.
Next add a gut that feels like it may explode.
Finally then imagine lying in bed, so needing to recharge but being unable to sleep even if someone knocked you out...then repeat for an unknown length of time...
At Osteopathy For All we do get it...look out for more blog posts on how to support yourself or your friends and family.
Do contact us for more information as to how we can support you.