It's been a weird few weeks. Once the Co-Enzyme Q10 from Great Ormond Street had run out, we have had immense difficulty getting the prescription repeated locally. The pharmacy have actually got the stuff in for her; but so far, no-one has signed the script off so they can issue it. The GP can't do it because it's an experimental treatment. It's being passed to and fro between Musgrove and Bristol and GOSH and so the treatment is on hiatus until they sort it out. I suspect this is because it costs £800 a month, rather than any other reason.
In the meantime, I've started having funny turns and was blue-lighted to hospital with a suspected stroke three weeks ago. Not a stroke, though, which is nice. Probably not epilepsy. But I still keep having seizures where I can't move independently and my face and limbs twitch and I can't talk, every couple of days. It leaves me exhausted and with my right side very weak for quite a while afterwards. The medics are putting it down to stress. Whatever's causing it, I can't drive and it's not responsible for me to be alone with the kids. So all in all, pretty bloody tedious. Particularly since getting cross seems to trigger it and I therefore can't get a decent head of steam up to fight with B without just checking out. I'm potentially open to the idea of him fitting me with some sort of Stepford Wife Chip that he can turn on and off if I start getting irate at him. Fellow Control Freaks will sympathise, I am sure.
Other things that have happened:
- The wheelchair broke down in the middle of Lampeter whilst we were on holiday in the second week of the school holidays. This was inconvenient and has not yet been fixed - they are waiting for parts. We have been lent one by a kind friend who didn't need his over the school holidays, but really, it shouldn't take a month to fix.
- The floor in N's bedroom is running with damp under the carpet. Landlords are very keen to fix it, but it's going to make the room uninhabitable for a fortnight. B has organised hospice time for her, for most of it, but it's still not wildly convenient.
- The van has been in for repairs. We have had a Vauxhall Corsa as a courtesy car, which has meant that the electric wheelchair couldn't go anywhere with us and we were stuck with the push-along one on outings.
- Barnardos have still not got their act together regarding the two overnights the Continuing Health Care Board promised us at the beginning of May. We are now hoping that we can sort out supporters to sleep in ourselves and be given a budget to manage to pay them out of.
- Because of the Inconvenient Seizures (tm) we had to rearrange our much-anticipated Make A Wish trip to EuroDisney that was supposed to take place two weekends ago. The children were extremely good about it and we are hoping to sort it again as soon as possible.
All in all, we're struggling a bit. B's knackered because he's doing absolutely everything, including looking after me. He took me for an acupuncture session in Taunton on Wednesday, went for a coffee and zoned out so far he forgot to come back to collect me. Not ideal. Funny in retrospect, though, particularly for people who know him well. I am looking at the Wallasey Lot as I type this.
As a distraction I am attempting to work as much Victorian idiom back in to the language as possible, starting with 'bang up to the Elephant' and 'not up to Dick'. Here. Get to work. You owe it yourself.
Also, and much more seriously, I am working on a list of organisations supporting refugees at Calais and in Hungary and Greece, that I will be putting up in a day or two.
For today, that is all.