I've had a lot of time to think recently, which is sometimes a good thing and sometimes bad. I thought it. Would be good to blog about the 'invisible' part of CRPS. The bits people don't see, the parts when you feel like falling apart, the struggles we face everyday with a smile on our faces, the mask that hides a thousand tears. People can be extremely quick to judge, just because you may 'look fine' that does not mean a thing.
PAIN! 💉
The most obvious invisible symptom of CRPS is the pain that we feel relentlessly, 24 hours a day, 7 days a week. Some people don't believe me when I say the pain is constant, it does not go away- but it's true. People describe the pain they feel differently but the common thing is the burning pain that is described, this may be an extremely hot burning sensation or a freezing cold sensation. For me, over time it has changed, when my CRPS was first triggered I felt a burning hot feeling but gradually over time this has changed to an ice burning feeling. They say this is partly because of the effect the nerves have had on the blood vessels and blood supply to my foot, it is now compromised. As well as the burning feeling I was describe my pain as a sharp stabbing pain and a shooting pain that goes from my toes to my thigh. Pain in itself is a symptom that greatly affects the mobility of patients and their ability to carry out 'standard' everyday tasks. You really could never imagine the pain until you have experienced it. After a while, we learn to try and mask our pain. We smile on the outside when it feels like our bodies are in self destruct mode. It is hard to mask the pain but it has to be done to try and progress with life and have some kind of normality back.
Sensitivity. 😰
Another invisible symptom that is linked to the pain felt by sufferers is sensitivity. This means the even the slightest touch can cause extreme, uncontrollable pain. The sensitivity is a hard thing to conquer, some people manage to use desensitisation techniques to teach themselves to tolerate it but for other sufferers, this just isn't possible. The 'fear' of the affected limb getting touched lead many sufferers to try and guard their affected limb from anything that may touch. Unfortunately I fall into the category of people to try to protect their limb from anything knocking it because the pain is unbelievable. At times I find it hard to enjoy certain things because I am so worried about people knocking my leg. For me the sensitivity doesn't end with only people knocking my leg but for example if the wind blows strongly it's hurts. If it is raining heavily, the rain drops hurt. Vibrations from loud noises hurt. And when the weather turns cold, it causes me increased pain.
Emotions. 😕
Living in chronic pain also impact on your emotions as it is exhausting trying to hide the pain you are in constantly. Many people who live with chronic pain or CRPS experience depression at some point, this is often part of acceptance and the realisation that you can no longer do what you were once able to. I also have anxiety and PTSD (Post traumatic stress disorder) in relation to my CRPS and the experiences I've had since my CRPS was triggered. At times it is hard but my boyfriend, family and friends make a big difference to my mood. Since Dan and I have been together my anxiety has improved a lot, I think it's because I feel safe when we go out together and now often I never think of the things I used to worry about when I went out. For people with CRPS it is often recommended you have a multi-disciplinary team including: anaesthetists, pain management consultants, physiotherapists and psychologists to work together on all of the problems having an invisible illness causes. Sometimes people won't see psychologists because they're worried people will think they are mad or crazy but that's not the point. At first I was sceptical but now I realise that they're help is very valuable. For me they've helped me to learn to stay calm during pain flares, helped reduce my PTSD symptoms and anxiety, they've also helped me realise that I'm still the same person I was before and how to accept what I can and cannot do right now. I really think i would be in a lot worse position now if I hadn't accepted they're help.
With CRPS only occasinally are they visible symptoms such as colour changes to the skin, changes to nails, ulceration, dry or shiny thin skin but even these are hard to spot, you'd have to be looking pretty closely. The problem is many people can be too quick to judge that you may 'look fine' but actually they will never know what we go through every day. So next time you try and judge a book by its cover, just think that not all disabilities are so obvious and you can never guess what's happening on the inside.
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