I hate writing blog posts when hubby as home as I never seem to get a minutes peace to do it and it’s even worse when he’s home poorly because all my energy is focused on him. Thankfully he seems to have turned a corner and is doing much better, managing to eat for the first time in a couple of days.
So this blog post will be a quick one so that everyone is caught up with everything that has been going on in the last 7 days.
We celebrated 16 years of marriage on Sunday, something we are both proud of having seen many of our friends marriages fall by the wayside over that 16 year period. Things haven’t been easy for us but we know that we are stronger together and can’t see any point in life without each other. Chronic illness is hard on relationships but somehow we have made it work and we are proud of that.
We marked our anniversary by going out with the dogs. It was my first trip up to Woodbury Common with the dogs since getting my power trike and new wheelchair. It almost didn’t happen when I realised halfway there that I had forgotten to bring the keys to switch the power trike on with me. Hubby turned the car around and we went back and got the keys. The next problem was the bike light. I hadn’t thought to attach it previously and now I was having to try to do it in complete darkness. We went out at 04:30am so there wasn’t even the dawn to help us. In the end I decided to just hold the bike light in my mouth as there was no way I wasn’t going to get out on the trike.
It was brilliant and the dogs took to it like ducks to water, running along beside me like they’d done it all their lives. Frankie loved being able to trot along behind me and the girls enjoyed running in between hubby and I. Due to the bike light issue there wasn’t much conversation but just having the freedom to get out and move under my own steam was enough. I was knackered afterwards and could barely move my arms for a few hours afterwards. It is amazing how good it feels to be tired because you’ve done something you wanted to do rather than just being exhausted by chronic illness.
I also managed to forget to take my mobile phone, which on the way home from Woodbury Common I was convinced I had managed to lose it their. Despite hubby telling me I had left it at the house, he should know he saw it twice having gone back in, to collect the keys. So there are no photo’s or video but I doubt they would have been any good due to the fact it was pitch black other than the light from hubby's torch and the bike light. So despite it being a tiny bit of a disaster, forgotten keys, bike light not attached we did enjoy ourselves and it was a rare treat for me to get out of the house for something other than a medical appointment.
So far (touch wood, luckily my foot is touching the wooden coffee table whilst I type) I haven’t succumbed to the illness hubby has been suffering with, although in the last two days I have slept more than I have in months. I have gone back to bed each afternoon and gone straight to sleep. Each evening I have been asleep a little after 17:00. So I am obviously not right either. I am just lucky not to have had the projectile vomiting and diarrhoea that hubby has suffered with.
Unfortunately I had to cancel my neurology appointment that I was supposed to attend today (28th Sept) but hubby was not well enough to drive me for over an hour and I am sure that the hospital would have preferred that he would have stayed away. Ringing the appointments line to cancel though, I was made to feel that I should make an attempt to get there at all costs, even if that meant turning up with a husband who had sickness and diarrhoea. This is obviously in direct contradiction to what all hospitals say to visitors / out patients which is to stay away if you have S&D, due to the fact it’s highly contagious and many patients have suppressed immune systems. I was told that all the appointments for the next 6 weeks were booked and they would have to contact me when the next appointment became available. I am gutted obviously as I really needed to attend the appointment but other than grow a set of wings I had no way of getting there. I no longer hold a driving licence, so couldn’t drive and none of my family could help as they also had appointments that day. If I could have got there I would.
So now I have to wait for another appointment and just hope that they don’t attempt to discharge me for not attending. They are so oversubscribed with demand for appointments they have been using quite underhand tactics to tackle their waiting lists.
I do have some good news though, I have an appointment through for the National Ehlers Danlos Unit at the end of November. Which is much sooner than I thought it would be. I thought I would be waiting until after Christmas to get an appointment. At last something seems to have gone right.