During the rest of that night, in common with hospital stays everywhere, I think a different person was in my room every 30 minutes to check serum levels, blood pressure, bring dinner, clear away dinner...
By the time 11pm came around, I was tired enough to be almost asleep, at which point another nurse came in, woke me up and gave me a sleeping tablet...
I suppose everyone should know by now, you don't go to hospital to rest.
I think at 5.30 I was woken again for a blood pressure test, and then at 7.30 for breakfast.
Saturday continued like this with people in and out to tidy the room, make the bed, clean the floor, take away the breakfast things.
I don't understand why one person cannot do all these tasks, and get the entire faffing about finished in one visit, allowing the patients some privacy and time to rest. Actually, maybe that's part of the plan - prevent us from becoming too comfortable so we try to check ourselves out as soon as possible!
Anyway, by around 11am, I had seen my DR who was asking if, following the first course of the corticosteroids, had there been any improvement yet in the numbness (there hadn't been), and to let me know the second course was coming soon.
The drugs duly arrived and I had hooked the corticosteroids to the wheeled stand so I had a little more mobility, allowing me to move my laptop and kindle across the room, so I was now sitting outside and enjoying some early morning sun on the mini-terrace that was outside my bedroom.
I went to the bathroom, wheeling and shuffling myself across the floor, and then back again to the mini-terrace I had. After which time, I noticed that there was quite a bit of blood that had run back into the catheter tube and also that my corticosteroids had finished.
I called the nurse and she came and checked everything, telling me that my blood pressure had driven some blood out into the safety valve and 'no pasa nada'.
Lunch came (not quite as memorable as the day before but still pretty good) and then my DR came by for another visit and asked again how I was feeling and if the anti-inflammatory drugs were helping. This was about 90 minutes after the second course had finished and by now, I could detect a slight improvement in sensation.
The numbness seemed to have disappeared from the top of my shoulder and lower neck, although my face and nostril were unchanged.
At this point, I felt that if this was as bad as it ever got, then I could consider myself quite lucky.
The DR visited me again later on and then we discussed Multiple Sclerosis generally, my future prognosis, drug therapies, my feelings and short-term impact.
He told me that, firstly, if anyone 'has' to get MS, then the form of Relapsing Remitting Multiple Sclerosis (RRMS) I'd got, would possibly be the absolute best case scenario - so...Yay! ??
Mainly because, the two symptoms I'd had (shadow in the eye and the numbness) were sensory, not too serious and I'd had no issues with motor functions.
Secondly, since the number of lesions were low, and I'd had just 2 symptoms in a year (I had 4-5 small lesions, and apparently, the majority of the population experience lesions at some point without any symptoms), I was considered as being only just suitable as a candidate for drug therapy.
Perhaps also thirdly, RRMS starts out as being the most easily managed (from both a drug and also managed lifestyle point of view) of the types off MS that are known of:
- relapsing remitting,
- secondary progressive,
- primary progressive, and
- progressive relapsing.
As I was already 42 when the symptoms with the facial numbness had occurred, I was already older than the average age group of first symptoms/diagnosis.
RRMS is also the type that is most responsive to therapy and accordingly, there are more therapies available for it.
All of which supported the DRs belief that bad news though it was, it could have been so much worse.
Early Proposal for Drug Therapy
The standard drug for treatment of RRMS is the beta-blocker Interferon beta-1b and this is ordinarily
injected on a daily basis. I'm not going to write more about about the Interferon/Drug Therapies just now as they are not part of my Treatment Plan. He said that there was no rush to make a decision about the drug therapies just now, particularly since the Lumbar Puncture results (there were to be two different sets) would not be available until at least two weeks later.
This meant that a new appointment would be made and if the results of the LP were in, then we would have a better understanding about ruling out other causes, severity, re-affirmation of MS and so on.
At this stage, physically, I was feeling pretty good, although I suppose that mentally and emotionally I was still somewhat distanced from the reality and perhaps this helped stop me from feeling overwhelmed.
The corticosteroids had also had an additional benefit - for the past 6 months, I had been suffering mildly from tendonitis in my (Kian carrying) left arm and a few years ago, I had torn the rotator cuff in my right arm. The anti-inflammatory drugs (the corticosteroids) were so good, that for the first time in ages, showering meant I could easily wash my back on both sides with no pain and shave without any discomfort.
Small mercies and all that!
The numbness in my face still continued, and shaving in particular felt a bit strange, in particular in the left/right divide of my chin and top lip. I wasn't shaving as close as normal, especially just under the left nostril, because I had reduced sensory feedback on how hard I was shaving, so I was being a little cautious.
A short while after I had finished prettying myself up (?), one of our friends, Farshid, arrived to collect me and take me home.
I had been adamant (prince charming, sorry, another joke) that I would be fine to take the metro home (about an hour or so) as I'd not been too bothered by the post LP headaches.
Having said that, Farshid not only helped me organise the many receipts, appointments, bills and assorted other papers, he also waited for me whilst I paid the remainder of my costs (so far totalling around 2000€) and then he drove me home through Madrid during peak-time traffic.
When I got home, my sister Lee had already arrived - her nightmare had yet to begin because I had a craving for a Cornish pasty, meaning Lee had to make it, including the short-crust pastry. So, whilst I was busy inducing terrors on other people, I sat down, sat back, just sat, generally, and tried to make sense of the last couple of days.
A bit of interesting news came from my friend Ahmad - he was also in a state of some shock about my news, but had been, and continued to believe that it would never present itself as a problem in the future.
How is this news? Well, apart from the fact that he is also a DR, he sometimes has feelings about events that turn out to be true. So at the very least, supportive...
Also, he outlined to me that MS was (statistically speaking anyway), more common amongst:
Northern countries
Women.
Meaning I should therefore be 6ft tall, blonde and with a much more interesting chest development.
:)
Friends are great!!
I still believe it never comes back.
ReplyDeleteEspecially if I maintain my current regime!
ReplyDelete