What does It Feel Like?
It is really important to me that others begin to understand what suffering from ARD actually feels like. Of course I have explained this to the people closest to me. I believe it has helped them to get an idea of what it is like and and sharing it with them has helped me tremendously but somehow that just doesn’t feel enough and as challenging as it is for me to write about it I feel I must.
Most people’s understanding is that it causes pain. It causes pain alright! It causes my insides to feel like they are pulling and tearing with every movement I make. It is constant although the severity of it fluctuates. There is never a time when it is not there, even when I am resting it is there as even breathing causes the abdomen to move. On very bad days breathing in can be very painful. The pain is mainly in the same places every time, as the parts of my body that are slowly being strangled by adhesions are not able to break free but as things progress and more adhesions form, the pain spreads to other parts of the abdomen. When pain is at it’s most intense it has a huge effect on the rest of my body and I can almost feel the energy being drained out of me. It is a fatigue that is hard to explain. It is NOT the same as being a bit tired after a day’s work or having not slept well for a while. It is fatigue that is completely unmanageable and i cannot use my body the way I would like to. To give an example of what completely unmanageable means – I have days where I get up and get in the shower and the act of showering is so exhausting and difficult that I will then go back to bed to recover from it for a few hours. This does not happen every day. Other days it is much easier. Pain and fatigue are not the only symptoms present with ARD. When your insides are being restricted and pulled about constantly with no break at all it puts a huge amount of stress on the rest of the body. This causes me migraines every few days. For me these get worse over time as the adhesions thicken and pull tighter. Because I am very limited in the things I can eat now I mainly eat soup, preferably home made as tinned soup has very little nutritional value. People often assume that if I just stick to eating soup I will be pain free. It is not the same as controlling an allergy with certain foods. Soup still causes pain every time as my insides still need to move about while they are digesting it which they cannot do now they are tied up with adhesions but it is still less likely to cause me a bowel obstruction and stay in my stomach than other foods. This applies to other liquid foods too of course. Some weeks if I am experiencing a huge flare up of pain I will not eat at all because I know how bad the pain that follows will be. As it starts to calm slightly I might have clear soups. We all know hat not eating has a huge effect on the body but sadly for someone with ARD it is often the only way to get through the day.
One day when I was struggling to explain what it felt like to live with a chronic illness to somebody I stumbled across an article online. I was so incredibly relieved to find it and so grateful to the person who wrote it for doing so so thoughtfully and accurately. I was also a bit annoyed that I hadn’t written it myself because every single word of it was so truthful and summed things up perfectly. Of course many others had discovered it before me and had found great comfort in it. People ask me how I manage to do things when I’m feeling so unwell. I have tried to explain that I have to prepare myself for doing things in a different way than I did before and prioritise differently. In order to do some things I have to sacrifice doing other things. This article has explained all that and so much more and is totally spot on! You can read The Spoon Theory here. Please do!