When is a cold just that, a cold, when it comes to me. Late last week, on the tail end of yet another nasty infection, I wound up with some kind of cold. That, as colds always seem to with me these days, went straight to my chest and even though my nose was clear and I didn't feel too bunged up, I have had one of the most horrible coughs, with a lovely undertow of wheeze, that I have had in a long while. I think it goes without saying that as a result neither myself nor Becky have had a good time trying to sleep with that going on. Between the two of us, I think she has had the worst of the sleep disturbance and I do feel a bit bad about it all, but at least she understands what is making it happen, this I am glad of.
I have spent most of the day between nebs, either sleeping, playing the Sims or nebbing. It seems that right now, I am spending most of my time tethered to a machine, but to be honest, I can live with that and accept it. What does get on my nerves is the feeling of being stuck in one place, that kind of comes with the territory of being me and having the conditions that I have. The hard part at times can be the admitting that something isn't quite right, or that that the thing you thought you had under control was actually spiraling way out of any form of control. I hate having to admit that to myself, let alone other people.
Right now, I am waiting for my mobility scooter (which a good friend is helping me organise) to be delivered. I think as soon as that comes, I am going to feel the benefit as I will be able to get mobile and get around town again, without that fear of being so short of breath or in pain from my orthopedic issues. Its been a bit hard to admit that I need help and its not an optional thing. But at the same time, I am glad that I have stuck my hand up and said "OK, I need help here" because as things stand, I am struggling to move or walk anywhere and that is having a negative impact on my physical and emotional wellbeing. I am glad that now I know my weight (which is perfectly healthy for my height and build, in fact, it is the lowest weight that I have been since beginning treatment) is now not the problem. The problem is the fact that my bones are weakened and the slight curve in my spine is entraping some nerves causing painful spasm and neuropathy.On top of that, adding in my stiff joints and bad lungs, and well you can imagine the final outcome really, but I do feel that by finally admitting I have a problem getting around these days, I am now open to the help I need.
I do feel now that nothing is going to get in my way anymore and I am going to continue to strive towards independent living and being able to do whatever I need to by myself. Maybe, eventually, I will be able to get from one end of the supermarket or shopping centre to the next without pain or discomfort, without the use of a machine to help me breathe or get around, but that is something I can work towards. I just hope that people are not as judgemental as they have been in the past. One thing that does still get my back up is the attitude from some of the older people towards younger people like me having disabilities. I am tempted to get a shirt that says "Some young people are disabled. Get over it." just to stop people being so judgemental. Just because my illness is invisible, does not make it any less real, any less painful. But that is something to work towards.
4 years ago