A life with Chronic diseases is a chronic pain in the arse. That seems like a obvious statement but for you and the people in your inner circle its not so simple. see here for details of my diseases… https://lifeattheknackersyard.wordpress.com/2017/01/09/my-lupus-story/
At the minute I am at the point with my body where I don’t feel I can make the right decision, even to the point of knowing whether to get out of bed or not. Last Monday evening I was bawling my eyes out because I’d stayed in bed for the day, It was something I had to do to get through the rest of the week but I felt useless and shitty for it. At that moment I told my husband/carer that I want him to make me get out of bed. The fatigue is not only in my muscles and bones anymore it has taken over my mind. I feel out of control and struggle more and more each day trying to work out what is the right decision for my mind, my body and my family. If I wake up sore and tired do I stay in bed and rest? Move around a little? Or sit in the yard to get some fresh air? Once again it seems simple but each of these options come with there own issues to think about. If I stay in bed it makes me feel useless and separate from the rest of the family, usually ending with me in tears. Moving around could put too much pressure on my already tired body and put me in bed for longer. Sitting in the yard is nice but even when it’s not sunny. My, as do most people with lupus skin burns really easily from even just a short time outside. It just gets on my nerves that every little decision has a consequence when you have so many illnesses, if it was put on a flow chart there would be no end.
Hospital appointments are also a part of your life, much more often than we would like. Especially as living in a small town my hospital visits could be anywhere from 20 miles, 50 miles or 100 miles away. Recently we moved house and in the crossover I misplaced my appointments, mainly because my memory has become so bad that I can’t remember where I put them and what appointment is in which hospital. It was this one stupid thing that just pushed me over the edge this week, my annoyance over the situation gave me stomach ache head ache and of course tears. (No surprise there) I realise in my moments of lucidity that this behavior is illogical, it can be sorted. My husband always tries to make me feel better but it’s so hard because it makes me question how much worse my memory and cognitive issues might get.
I have been watching a series on YouTube about a woman called Molly who has lewy body dementia, there have been thirty episodes so far and seeing her decline is scary and hits home with me. Although I don’t have a dementia I can relate to her anxiety, forgetfulness and fears of what the future holds. If you haven’t seen it here’s a link to their site… https://mollysmovement.com/ I feel for her, her family and others like her, shes only 66 and it is a disease that could strike down any of us at anytime. I had an uncle that had lewy body dementia and as the disease progressed (rapidly) being near him felt like talking to an empty shell. His mannerisms had changed, his character was completely different and his energy/aura had disappeared. It was a very sad situation for everyone so please share the message of Molly’s Movement.
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