I am just about on my knees with exhaustion. This month has been wayyyy too much for a person with M.E., let alone all my other issues, and I’m at risk of having a relapse if I don’t rest more. However, my parents both have several hospital appointments looming including my Dad’s hip replacement surgery and my house is still up for sale, so rest isn’t on the cards any time soon despite the concerns I have about the impact on my health.
Monday was my Dad’s first appointment with Rheumatology regarding his suspected Sjogren’s Syndrome. As you may remember, as a last resort to try and find out the cause of his severe sensorimotor polyneuropathy the Neurologist at the RVI ordered a lip biopsy to test for SS which showed mild inflammation in both his lip and neck glands. We were referred to a local rheumatologist, but as per sodding usual none of his test results had been sent through with the referral so when we saw him he had absolutely nothing to go on. It’s the 21st Century, the entire universe is connected via the internet…………apart from the NHS which doesn’t seem to think that having access to patient’s notes is a priority. FFS. Despite that, the Rheumy was excellent. Really knew his stuff, as well as knowing about CIDP (my dad’s initial diagnosis, which has since been changed) and MGUS (which my Dad also has). He did a thorough exam and took 7 phials of blood to test for all the things my Dad has already been tested for several times but of course the Rheumy didn’t know the results of – and we wonder why the NHS is skint He’ll get back in touch when the tests come back and he’s heard back from the RVI regarding my Dad’s lumbar puncture, nerve conduction study and precise lip biopsy results. It was a really good appointment though and I wish all the Consultants I came across were that clued up.
Tuesday I went back to my disabled friend’s house to help him unpack yet more boxes following his move. My best mate thinks I’m mental for doing this when I have so much of my own stuff going on, however he is severely disabled, 75 years old and has no-one else to help him. There are some things you can’t hire people to do – you need someone you know and trust to put your undies away, to sift through your most personal papers and to hug you when you come across the box containing photos of your dead wife. He is also a bit confused, so needs someone he knows to help him make decisions on what to keep and what to chuck out and to be patient with him while he makes up his mind. I’ve been totally alone and needing personal stuff done myself and when I am old and disabled as he currently is I will have no-one to help me. If you’ve never been in this position you have no clue how it feels and he needs empathy and compassion, not left to get on with it.
Thursday I met said best mate for lunch. I hadn’t seen her since before my London trip, so it was lovely to have a proper catch up and to get out of the house for a while. She totally saves my sanity 🙂
My cleaner was off for the 3rd week running with a bad back, so Friday found me changing the bed, doing laundry and cleaning the house as I have another viewing today. I really don’t need her to be awol at the mo and I know it’s irrational to get the hump with someone who is injured but I have it nevertheless!
Saturday I was up at 5.15am to go up to Edinburgh for the HEDGE study. Look out for a post on that in the next few days.
This morning, as I mentioned above, I have another viewing on my house so I’m having to get up early to take Bertie out then make the house immaculate. This house selling malarkey is knackering and on top of everything else that’s going on all feels too much. However, it has to be done so I’m just gritting my teeth and getting on with it. Wish me luck!