Last time I wrote about my issue with constipation and I didn't write until today because this blog post might have ended up being about nothing more.
However, following a brief meeting with the on-call doctor on Wednesday and a prescription for Movicol (and also 14!!!! enemas just in case) some movement has happened - woohoo - it's these little but important things that are the focus at the moment. I have stopped taking Cocodamol and until last night (Friday) have been getting by on paracetamol and ibuprofen. Last night I tried 5ml of Oramorph and did the same this morning when I woke in mid-level pain. The doc said Oramorph would also cause constipation so I am taking Movicol alongside to try and prevent the same blockage developing. I am wondering whether the digestive system being clear will help to alleviate the fatigue ...... One to watch maybe?
So, in terms of my other side-effects ..... the ulcers I am managing around them and the pain relief is making them manageable. Still have things luke warm and non-spicy and my taste is virtually nil. My face is increasingly red and feels very sun-burnt down the right hand side in a block from my cheek bones, running 3 inches or so (in width) down to my neck. It extends over my ear and behind my ear where the hair has fallen out. I stopped using Aqueous cream when the itching behind my ear started to increase, and instead apply E45 cream. Last night I put on some Aloe Vera gel to try and ease the burning (appearance and feeling).
What may have contributed to the burning feeling is the fact that I had double treatment yesterday (Friday) .... one at 7.50am and the next at 2.30pm. The Receptionist very kindly said I could use one of the treatment ante-rooms to lay down in between treatments. This made a big difference, rather than contending with the Friday, end of school term, M1 traffic between hospital and home ..... so I was able to have a couple of snoozes throughout the day. My poor, unfortunate mum didn't have anywhere to lay and spent her time reading, and sewing!!
My double vision (probably related to my MS) is still present and at my Orthoptist appointment on Thursday a temporary prism lens was applied to one of my spectacle lenses. My vision is perfect with this lens on, and the appearance of the prism to people looking at me is non-apparent. Having normal vision restored is a big positive for me. Now we just need to keep track of my vision and my follow up is when I have my end of RT treatment follow-up on 6th May.
So, this week has seen a couple of positives - blockage clearance and vision-correction - and I am going to hang onto these!
I am at home this weekend and resting in the hope that I will be able to manage a nice family weekend at Butlins next weekend. Mum's here looking after me .... but everyone else have gone to Yorkshire. I took the decision to stay here and miss accompanying my husband to his Christmas gift - concert to see one of our favourite bands, Goldfrapp.
For Butlins, I explained my situation to them and asked that I could be treated as a disabled person for our break. This used to be a really difficult thing for me to come to terms with following my MS diagnosis .... but having experienced a couple of debilitating relapses and having held a blue badge for 12 months when it was at its worst, I have no qualms or embarrassment in using these words. So, I have unashamedly organised a wheelchair (so my family and friends have the option of dumping me in a corner to snore); a wheelchair compatible room with sea views in our hotel;a 'fast pass' so we don't have to queue so long for the shows ....... woohoo Scooby Doo and Dick and Dom here we come ....... ; but I don't think I'll make Splash Water World or the Fun Fair this year. Instead I aim to make sure my hubby gets a good work out whilst he pushes his lovely, fatigued wife around in a wheelchair!
