Can the elephant stay out of the room
In February 2017 I wrote a blog about getting Botox injections for my bladder. Looking back it makes an enormous difference to my life. It changed, totally changed. Suddenly I did not have to worry about finding the loo or embarrassing myself. It was as if an enormous elephant had left the room.
Describe it if you can
The feeling when your bladder suddenly says ‘empty me’ cannot be put into words very easily. Imagine when something is going to happen but is there no way to stop the inevitable. It’s a car crash, total helplessness.
You soon get used to it
It didn’t take long for me to get used to the freedom. Within two weeks the fear of an accident was history. Luckily I had the sense to ask them how long the Botox would be effective.
‘Oh about 8 to 10 months’ they said. ‘You will know when it stops being effective. Just give us a ring and we will put you on the waiting list for some more Botox’. It all sounded so simple.
Here we go again
At the end of October I started waking up at about five in the morning needing to have a wee. When this went on for three consecutive days I knew something had changed. I could still only go to the loo by doing Intermittent Self Catheterisation. By the time I had got out of bed catheterised and got back into bed I was wide awake 🙁 .
Stroke of luck
At night I take Tizanadine for spasms in my legs. One of the side-effects it that it makes me feel drowsy but it is not addictive (I hope). So if I was feeling a bit sleep deprived at five in the morning I take one or two of these pills. Problem solved. Meanwhile October soon became November and then December and I still did not have a date for some more Botox.
Can the elephant stay out of the room?
December 2017, its was almost 11 months since my Botox injections. I was in Queen square so I thought I would check things out with the uro neurology department at the National Hospital for Neurology and Neurosurgery. I had not heard anything at all since contacting them at the end of October. Had my request slipped off the radar screen or had a letter been lost in the post? I was definitely a bit concerned.
I spoke to the nurse
‘Whereabouts am I on the list?’ I asked her.
‘You are number 33’ the nurse said. ‘We will be in touch with you when you get near the top’.
Number 33 on the list. I had phoned them up two months before. I really had not expected there to be that long a list or that long to wait.
Almost a year since my Botox injection
Things are still okay. No accidents or embarrassments yet. I still wake up most mornings at about 5 to have a tiny pee. I have just got to hang on in. None the less I do ask myself, ‘Can the elephant stay out of the room?’.
Visit to the dentist and an overactive bladder
You are fantastic
Keep this going
Its a way I use to help me to cope with MS and stops me having a rant
Thank you so much. its my therapy and stops me from ranting
Thanks for keeping us up to date.
Hopefully I will get some more BOTOX before too long
As you know MS is a moving picture. Talking about it makes it much easier for me to cope
Yes, Patrick, yes.
I am responding both to this post and to the email that your blog sent me:
“Retaining use of upper limbs
Do you live in or near London? Do you have advanced MS? Do you have mobility problems. If you have answered YES to these three questions then you need to go to the #ThinkHand event organised by the consultants of Barts MS. Follow this link https://goo.gl/xYjw4i or EventBrite. I hope to see some of you there”
#ThinkHand is essential in resisting the “they’ll die soon” attitude to the no longer ambulant pwMS population.
As are these reflections from the year past on the same blog – http://multiple-sclerosis-research.blogspot.com/2018/01/2017-reflections-on-another-year-in.html
Early stage MS is now almost 100% curable if one takes the risk, and expense, of HSCT.
When will the folk, setting the policies that leave you waiting so long for Botox, wake up to the notion that the current funding of all the prolonged care for those as afflicted as you, and worse, would be very substantially offset by HSCT.
Ah me, that elephant.
The #ThinkHand campaign is very important and that is why I mentioned it. From what I understand it is to enable a greater range of people with MS to take part in medical trials, people in a wheelchair need to retain upper limb use and MS affects the whole body.
HSCT is good, it is undergoing trials in the UK but small matter of dosh or lack of it stops me going abroad for treatment. I think HSCT stops MS progressing but it is not a cure and will not mend existing damage. If it is accepted by NICE then I think it will only be for early stage MS. This country is a bit tight fisted
The #ThinkHand campaign is very relevant to people with advanced MS and an EDSS >= 6.0. It wants drug trials to include people with progessive MS, those in a wheelchair and make people more aware of the importance of retaining upper limb use who have lost or suffer impaired mobility.I think it will be an interesting meeting as well as groundbreaking.
HSCT is good, undergoing trials in the UK. If it is licenced then, I think, only those with early stage MS will be eligible. This is the sort of area where #ThinkHand will be so relevant