What if we viewed lived experience as an asset? As an asset of professional, economic,…
I am well aware that I must sound like I’ve swallowed a medical dictionary and talk in medi-speak (thanks to Stephanie Nimmo for that word!), and not all of you will understand what I’m going on about. I will provide a glossary on my blog to explain some of the words in laymans terms, I just haven’t got round to it yet. This post will explain what my conditions and their complications mean for me. And what they mean to me.
My 3 most prominent conditions I will briefly explain for you. I have Ehlers Danlos Syndrome (EDS), hypermobility type. It is caused by a defect in the protein collagen and results in weak and stretchy connective tissue, which includes the ligaments, skin, blood vessels and hollow organs. I also suffer with dysfunction of the autonomic nervous system (Autonomic Dysfunction/Dysautonomia), specifically Postural Orthostatic Tachycardia Syndrome (POTS). The autonomic nervous system controls all the unconscious functions in the body, including blood pressure, heart rate, breathing, sweating and digestion. POTS causes an abnormal increase in heart rate upon change of posture (laying to sitting, sitting to standing), often accompanied by a drop in blood pressure. And for those of us who also have EDS, the blood pools in our legs and lower abdomen because the veins are too stretchy, further complicating the high heart rate as the body desperately tries to pump blood up to the brain. Another condition I suffer with, which is the most problematic for me, is Chronic Intestinal Pseudo Obstruction (CIPs/CIPO). CIPs is a disorder of the digestive system that effects the movement of contents through the gastrointestinal tract. The coordinated contractions (peristalsis) in the intestinal tract become altered and inefficient, causing symptoms of an obstruction even though no physical obstruction is present (hence the term “Pseudo Obstruction”). It has caused my gut to fail completely, so I am now in intestinal failure, requiring intravenous feeding (TPN) and I may also require an intestinal transplant.
What does it mean for me?
It means my life expectancy will be reduced. Unfortunately, mine will most likely be significantly reduced. We can only take one day at a time. The CIPs and intestinal failure are not terminal, just life limiting, but the lifesaving TPN has many life threatening complications, so at any point the condition could become life threatening. I have a very poor quality of life, and each day is a fight to survive and cope. I suffer with many distressing and problematic symptoms, which are often hard to manage, such as pain, nausea, bloating, headaches, extreme thirst, urine incontinence, joint dislocations, weakness, palpitations and difficulty sitting up. We are trying desperately hard to improve my quality of life and to make the most of each day, but at the moment we aren’t getting anywhere. I have appointments coming up which we are pinning a lot of hope on, but we know we are fighting an impossible battle. Well, almost impossible. There is not much that can be done, but there are things we can try, and that’s all we are asking my doctors to do; try.
What does it mean to me?
It means I have to accept my own mortality. It means I have to accept the uncertainty. It means I have to try to live life, do as much as I can, make the most of each day, but still only take one day at a time, tomorrow is never certain. I have to stay hopeful and believe.; believe in myself, believe in the future, and believe that everything will work out ok. The only problem I have is putting this all into practise!
It still doesn’t feel real. I always feel like a fraud when I tell people my life will be limited, especially when I say I am dying. It just feels wrong. I always think “that can’t be true”. How am I supposed to accept that my life won’t be as long as I expected? I’ve already given up so much of my life to my illnesses, and one day it’s going to take my life completely. I gave up riding, walking my dogs, walking (full stop), going to school, eating, becoming a doctor, being able to do things for myself, etc…..so many things. Was that not enough?
What gets to me the most though is that I might not get to see my sister get married and have children, and I might never get to meet my future niece(s) and nephew(s). That’s eating me up inside. My sister and I have already missed out on so many sister “things”. Before I got ill we couldn’t be in the same room as one another without arguing and usually fighting. Even in the car, we used to argue if one of us looked out of the other’s window!! We were terrible. Since I’ve been ill we have managed to get along, and are closer than we’ve ever been, but now we’re missing out on so much together. Things like Vicky would have taken me out clubbing, bought me my first drink, probably been there the first time I got drunk, been the one I called when I got into trouble and didn’t want mum to know, etc.. All the little things. They’re the things we remember. Vicky and I never got that, and we never will. And now I might not be there on her big day, to see her get married and be involved in all of the preparation and celebration. It’s not fair for me, but even more so for Vicky who would miss having her sister there. I should be a bridesmaid, possibly her maid of honour, help to organise everything, help her choose her dress, to be there for her and be the person she turns to and can bounce ideas off. I should be there as I am her sister. And even more importantly I might miss out on her starting a family. I might miss out on my future family.
There’s also the possibility that my mum may outlive me, which I know would crush her. Just the thought terrifies and saddens her. Parents never want to bury their children; they shouldn’t have to. For my mum’s sake I don’t want to die before her, but, I know it’s selfish, in some way I’d sooner go before her, because I don’t think I could cope with losing her. I can’t imagine living without her; she is such a big part of me. And I am such a big part of her. It’s not right. There’s nothing right about it. It’s unfair, but then again, life is unfair.
All I can hope is that my death will be peaceful and painless, and I won’t be on my own.
Just do me one favour: never pass on an opportunity to tell your family and those close to you how much you love and appreciate them. Life is so fragile.