A Non-Tea Infusion & The Pressure
04/07/22 11:45
A Welcome Drip and An Unwelcome Pressure
(or 'The Drip & Assumption is the Mother of')
Following my acceptance into the less than exclusive Covid Club I'd been inundated with texts and phone calls from the NHS (automated), GP, and from local NHS service teams. After sending the PCR test on Friday I got sent a text reporting the positive result to me on Saturday night. All very efficient. I'd been told previously that I may be able to get one of a couple of treatment options due to my MS. The options were tablets (a five day course) or a single half hour infusion (drip). I am not entirely sure on the true nature of the risk from Covid to someone with MS as opposed to someone without it. Indeed I expect the biggest risk from an episode of Covid to me would be the danger of it kickstarting a relapse. It is well documented that being at a low ebb, be it from illness or stress, can be a contributory factor to relapses. And so whilst I am not feeling that bad at the moment from it any treatment options which could spare me the unknown effects of a relapse had to be welcome. If I was offered the choice I would go for the infusion.
Yesterday morning I had a phone call from a local service team who asked a few questions about the Covid and when I first had symptoms etc. I was a little unsure whether it was Monday afternoon or the early hours of Tuesday when I first felt something uncomfortable at the back of my throat – and subsequently the ridiculously runny nose. But I said Monday, not thinking 12/24 hours would make much of a difference. By the end of the call though it did sound like I may have talked myself out of the treatment option as that would make it the seventh day since contracting it: the treatment needs to be taken very early doors (ideally within 5 days of infection) to be most effective. She asked though whether I could make it to a treatment centre if the clinical decision was made to give me an infusion and I answered in the affirmative. I was told if they hadn't called me by 4pm then to call them to chase. As it happened I got a call by 12:30 and was told to go to Garston Treatment Centre for a 13:30 appointment.
The Procrastinator at Garston Treatment Centre
An hour after the phone call then I was sat on a soft blue chair in a small white room being asked a few questions, and in no time I was put on the drip. I was put on Sotrovimab (Xevudy) which is a 'neutralising monoclonal antibody', which apparently works by sticking to a spike protein on the surface of the virus, which stops the virus getting into the lungs and causing infection. The cannula was inserted first time and the drip did its thing (dripping) and half an hour so later the bag was empty and I guess I was fuller. Having had the treatment the risks of any infection getting so bad I could require hospital treatment are significantly reduced. In short it was a few hours well spent on Sunday afternoon.
The after effect of a hole in the arm. Well you wouldn't want to see the cannula in place.
Whilst I was there my O2 stats were taken and I was passed a monitor to use at home; I don't get to keep it, it's just a loan for a couple of weeks to take a fortnight of measurements. Before going I was a bit worried about the O2. I mean to my knowledge I've never had Covid before, but what if I had and just didn't know? What if the O2 results showed unbeknownst to me I'd been significantly impacted? I needn't have worried the results were normal (between 96 and 99%). And have continued to be 98 or 99 since I've monitored at home. I'll get a daily text from the NHS asking to forward the O2 result for the day, and I have a table to keep the records of three readings or so a day. Being able to record it provides at the very least some peace of mind.
I read some of my current book, 'Homage to Gaia' by James Lovelock, and the nurse seemed genuinely interested in it, writing the title down to look it up. Hey, I'm an influencer! Couldn't get much reading done during the hour and half there. There were the questions, the arm taken out by the infusion, the general chat and the regular blood pressure observations. But I got some reading done. However the blood pressure records were important. I've had medication for elevated blood pressure for years, but since the MS diagnosis I've taken my eye of the ball with it and not been taking the tablets (Amlopodine) or monitoring it; partly because of my focus on the MS/Copaxone but mainly because I've lost quite a lot of weight and got significantly fitter since becoming a drayman nine months ago. With this compounded ball of assumption & hope I'd decided I probably didn't need the pills any more. I've never been a fan of pills really. Okay, I may not be a fan of pills but I am a firm believer in assumption being the mother of fuck up…
The monitoring over those ninety minutes yesterday made me restart on the Amlopodine as soon as I got back home – I think I've only got about ten days supply left over from when I stopped. I'll also start taking daily blood pressure readings from here on in so I've got records to give the GP as I look to get back to tablet popping. It nicely links in with the Gaia book too, as James Lovelock, in the chapters I'm currently reading, is going through several health travails (coincidentally his first wife suffered badly with MS for years).
When I got back home I had a phone call from a different Liverpool hospital. They 'had my medication ready' – what medication? 'The Covid treatment.' I told them I'd just been for the infusion. It appeared due to the involvement of the GP and the general NHS system there had been two routes progressed in unison without one trumping the other. There is so much going on with it then there is a danger that it must happen a lot, especially with time being of the essence. Well no tablets for me now. I was offered both the tablets and the infusion then; much better than being offered neither.
It's been a strange week. I have hardly left the house. But I've not felt too bad throughout and I expect the treatment can only help reduce the effects & risks. Waking up on Monday I still felt okay. Not going to do an LFT until the afternoon. I can't wait to see that dreaded line get fainter and then disappear. I took my Amlopodine after my first (essential) coffee - and I'll take my blood pressure later. Today will have included a Copaxone injection to my left leg, an Amlopodine tablet, an LFT, O2 measurements, and blood pressure monitoring. It sounds a lot when you write it down (it's the long words), but it's not really. One pill (daily), one injection (3 times a week), and some measurements. After all if you've got the measurements you can dispense with the assumptions.
Incidentally, the wonderful James Lovelock is 102 and still very much with us.
(or 'The Drip & Assumption is the Mother of')
Following my acceptance into the less than exclusive Covid Club I'd been inundated with texts and phone calls from the NHS (automated), GP, and from local NHS service teams. After sending the PCR test on Friday I got sent a text reporting the positive result to me on Saturday night. All very efficient. I'd been told previously that I may be able to get one of a couple of treatment options due to my MS. The options were tablets (a five day course) or a single half hour infusion (drip). I am not entirely sure on the true nature of the risk from Covid to someone with MS as opposed to someone without it. Indeed I expect the biggest risk from an episode of Covid to me would be the danger of it kickstarting a relapse. It is well documented that being at a low ebb, be it from illness or stress, can be a contributory factor to relapses. And so whilst I am not feeling that bad at the moment from it any treatment options which could spare me the unknown effects of a relapse had to be welcome. If I was offered the choice I would go for the infusion.
Yesterday morning I had a phone call from a local service team who asked a few questions about the Covid and when I first had symptoms etc. I was a little unsure whether it was Monday afternoon or the early hours of Tuesday when I first felt something uncomfortable at the back of my throat – and subsequently the ridiculously runny nose. But I said Monday, not thinking 12/24 hours would make much of a difference. By the end of the call though it did sound like I may have talked myself out of the treatment option as that would make it the seventh day since contracting it: the treatment needs to be taken very early doors (ideally within 5 days of infection) to be most effective. She asked though whether I could make it to a treatment centre if the clinical decision was made to give me an infusion and I answered in the affirmative. I was told if they hadn't called me by 4pm then to call them to chase. As it happened I got a call by 12:30 and was told to go to Garston Treatment Centre for a 13:30 appointment.
The Procrastinator at Garston Treatment Centre
An hour after the phone call then I was sat on a soft blue chair in a small white room being asked a few questions, and in no time I was put on the drip. I was put on Sotrovimab (Xevudy) which is a 'neutralising monoclonal antibody', which apparently works by sticking to a spike protein on the surface of the virus, which stops the virus getting into the lungs and causing infection. The cannula was inserted first time and the drip did its thing (dripping) and half an hour so later the bag was empty and I guess I was fuller. Having had the treatment the risks of any infection getting so bad I could require hospital treatment are significantly reduced. In short it was a few hours well spent on Sunday afternoon.
The after effect of a hole in the arm. Well you wouldn't want to see the cannula in place.
Whilst I was there my O2 stats were taken and I was passed a monitor to use at home; I don't get to keep it, it's just a loan for a couple of weeks to take a fortnight of measurements. Before going I was a bit worried about the O2. I mean to my knowledge I've never had Covid before, but what if I had and just didn't know? What if the O2 results showed unbeknownst to me I'd been significantly impacted? I needn't have worried the results were normal (between 96 and 99%). And have continued to be 98 or 99 since I've monitored at home. I'll get a daily text from the NHS asking to forward the O2 result for the day, and I have a table to keep the records of three readings or so a day. Being able to record it provides at the very least some peace of mind.
I read some of my current book, 'Homage to Gaia' by James Lovelock, and the nurse seemed genuinely interested in it, writing the title down to look it up. Hey, I'm an influencer! Couldn't get much reading done during the hour and half there. There were the questions, the arm taken out by the infusion, the general chat and the regular blood pressure observations. But I got some reading done. However the blood pressure records were important. I've had medication for elevated blood pressure for years, but since the MS diagnosis I've taken my eye of the ball with it and not been taking the tablets (Amlopodine) or monitoring it; partly because of my focus on the MS/Copaxone but mainly because I've lost quite a lot of weight and got significantly fitter since becoming a drayman nine months ago. With this compounded ball of assumption & hope I'd decided I probably didn't need the pills any more. I've never been a fan of pills really. Okay, I may not be a fan of pills but I am a firm believer in assumption being the mother of fuck up…
The monitoring over those ninety minutes yesterday made me restart on the Amlopodine as soon as I got back home – I think I've only got about ten days supply left over from when I stopped. I'll also start taking daily blood pressure readings from here on in so I've got records to give the GP as I look to get back to tablet popping. It nicely links in with the Gaia book too, as James Lovelock, in the chapters I'm currently reading, is going through several health travails (coincidentally his first wife suffered badly with MS for years).
When I got back home I had a phone call from a different Liverpool hospital. They 'had my medication ready' – what medication? 'The Covid treatment.' I told them I'd just been for the infusion. It appeared due to the involvement of the GP and the general NHS system there had been two routes progressed in unison without one trumping the other. There is so much going on with it then there is a danger that it must happen a lot, especially with time being of the essence. Well no tablets for me now. I was offered both the tablets and the infusion then; much better than being offered neither.
It's been a strange week. I have hardly left the house. But I've not felt too bad throughout and I expect the treatment can only help reduce the effects & risks. Waking up on Monday I still felt okay. Not going to do an LFT until the afternoon. I can't wait to see that dreaded line get fainter and then disappear. I took my Amlopodine after my first (essential) coffee - and I'll take my blood pressure later. Today will have included a Copaxone injection to my left leg, an Amlopodine tablet, an LFT, O2 measurements, and blood pressure monitoring. It sounds a lot when you write it down (it's the long words), but it's not really. One pill (daily), one injection (3 times a week), and some measurements. After all if you've got the measurements you can dispense with the assumptions.
Incidentally, the wonderful James Lovelock is 102 and still very much with us.
Comments
A Late Entry to the Club
01/07/22 21:12
A Different LFT Surprise
I've been dodging Covid for the whole time it's been ravaging its way up, down and around the country. Clearly I've not been hiding from it; in so much as I've gone out to places like work and pubs & bars, but I have continued to avoid crowded indoor places, and wear a mask when I am on public transport and shopping in supermarkets and the like.
A couple of times last weekend though I went out unintentionally without a mask and travelled on a train (once) and bus (three times). This was because of the hot weather meaning I wasn't with my usual jacket and/or I was still in my shorts (whilst my masks remained at home in my jackets and jeans). It's either God's way of telling me not to wear shorts and to always stick with my go to leather jackets – or it could just be down to me remembering every time I get to the door to check for "phone-keys-wallet… AND mask." The only time I was in a moderately busy room was the open mic on Thursday night in the Belvedere. The subsequent mics on Sunday and Monday were both very quiet and well ventilated. I tested positive for Covid with a Lateral Flow Test (LFT) on the following Thursday and my suspicion is that I've picked it up on one of my No.17 bus journeys, where you can't help but sit close to people for half an hour or so. It's a lot easier to find space and avoid people in town that it is on a bus. But who knows?
I've purposely avoided busy places in the main, with the odd exception for short periods – like the periodically busy/calm cycle whilst standing in the Grapes on a Friday night – and during the League Cup Final earlier in the year. The city's pubs have been much quieter than pre-pandemic for several reasons no doubt: eg the habits of people now used to sitting at home with some cans, the desire of people to avoid crowds, and the ever growing costs of life in general. So pubs have really not been a fearful place (at least my type of ale pubs) for meeting in over crowded atmospheres with challenging ventilation issues. And it's been easy to move on to quieter places within a hostelry or to another if I was concerned about it.
Whilst I've been carrying on with life I hardly know a soul who hasn't had the disease. And many have had it multiple times. I know I've been lucky not to have picked it up before.
A friend very recently managed to pass me a few boxes of LFTs which was much appreciated at the time – and even more so now. On Monday or Tuesday I began to feel a bit of a dry throat and then had two days of a very runny nose. I'm not usually one for getting colds, and although I sometimes (once ever three years or so) suffer a little from hay fever, I decided to test daily; as the sore throat in particular was unusual.
It was negative for the first few days but as the test on Thursday emerged to taunt me with the strident line, stating I was not in fact invulnerable to this virus, I was more than disappointed but was not surprised. It's set me up for an uncertain week or so. First though, because of my MS, I was categorised as a high risk and had been provided with a PCR test to use and send off in the event of a positive LFT. So on Friday morning I duly took the test and found a Priority Postbox.
In the meantime I'd completed the NHS reporting of the LFT and texts started to come through from that. The way they were worded were typical of the confusion of ambiguous statements. They also kind of indicated that the PCR was a bit of a waste of time in so much as they already stated that the ball could well be rolling with respect to antivirals notwithstanding the PCR result. Not sure whether this is because of a change in stance since sending out the PCRs or not – things by necessity are understandably changing all the time. But I was glad I'd made the effort to get the test done and sent in any case as surely the more data they have the better.
In the afternoon I got a call from my own GP to say that they'd seen my LFT result and she checked a few things re dates and symptoms etc. I must say I was actually impressed that the national system had flagged up the result to the GP surgery and that they had been able to follow it up so quickly. You sometimes assume these things just get lost in a black hole. But credit given where credit is due.
She said that I may be entitled to get antivirals. I told her that I'd had a text saying as much too. She confirmed that she'd fill in a form from her side which may increase the chances as she wasn't sure how the weekends were being served by the people dealing with things at the moment. I agreed to her doing that. In addition she said they should be able to supply a finger oxygen meter, which I definitely welcomed.
Now it's a case of waiting for the PCR result to be texted (I'm assuming Monday) and to deal with any follow up phone calls from the NHS on antivirals and the oximeter.
Whilst I did the PCR on Friday, I didn't bother doing another LFT. It was still going to positive just one day after the first after all. So I did my second one this morning (Saturday). Again it was positive – and if anything a slightly darker band. I wasn't feeling any worse though. I'll just have to see how many days it'll be…
In general my Covid episode has been:
Bit of a dry/sore throat - Monday on (first noticeable symptom)
Very runny nose - Monday on
Phlegm on the chest - Tuesday onwards
Some fever - Tuesday onwards
Stuffy head/slight headache - Tuesday on
Positive LFT - Thursday (30th Jun) - had negative LFTs Monday-Wednesday
Runny nose thankfully lasted only a couple of days
Phlegm has decreased each day and isn't that noticeable currently (Saturday)
Stuffy head and slight fever hasn't changed much, possibly slight dehydration affecting my head but am trying to keep on top of that.
In fact I think Tuesday/Wednesday morning was the worst of it.
I'm not intending to go out of the house much at all and when I do eg to a shop, I'll wear a mask and get in and out without hanging about. I've got enough food and drink for the weekend – if I do need anything in the next few days it'll probably only be a couple of pints of milk. Sadly there will be no social time. It's all a bit of a lottery when the tests may start to give favourable results. I've had mates okay after five days or so and others well over double that. I fear I am going to be so disappointed next Wednesday – I've got tickets for the brilliant Felice Brothers at Leaf and I'm going to be gutted if I'm not negative by then (in all probability I'll end up having to pass my ticket on to someone else). That will be really disappointing.
Next Friday I was supposed to be going to Bishop's Castle for our annual Shropshire pilgrimage. It could be a close call too – but in any case I've heard a couple of dubious comments from others that our trip may be cancelled anyway! I'll be doubly gutted to miss out on a great gig and boss camping weekend in one week. But I guess the immediate concern is health; both mine and the 'not passing it on' thing.
Whilst I am isolating it is still okay to get out whilst avoiding people. The legalities and common sense permit it. This morning I popped out for half an hour on my bike. Boy I did find it hard work. I wasn't much slower than usual (anywhere between 9.5 and 10.5 mph is about standard for me) – and the park has those bloody gates which makes you get off your bike to get through them so timing is messed up. By the time I got back home I had a right sweat on. This should not really be the case. But I guess the body is trying to do its fighting the infection thing. I'm not entirely sure if exercising whilst fighting an infection is the right thing or the exact opposite of it. Perhaps I should use the doubt as an excuse to sit around and do nothing. I do wonder whether my O2 stats will be right or not, and I do hope I get given a meter this week to check that out.
In summary, (besides being a bugger to finally succumb to this damnable disease) I'm doing okay. The phlegm was horrible for a day or so, the runny nose too (but people with hay fever this year have had it much worse), and the heavy head is a bit of an annoyance. The main thing is the fever. It's not that high, but it doesn't take much to overheat me. I'll have to route around for where I've put my thermometer to see what my temperatures are trending at. I am quite tired too. But when you get a fever you get tired so hopefully it's just that. I really want to be better by Wednesday so that I can go to a gig. For that I am a hopeful loon, but not an expectant one. As for Bishop's Castle, that is apparently anyones guess.
Lastly, but I guess most importantly, is how this may affect my MS. The biggest fear from any change in circumstances is that it preludes a relapse. There is no reason to think it will, but it could also be argued that there is no reason to say that it won't. Both Covid and MS are such contrary unpredictable bastards. Of course the hope is that it makes not a jot of difference at this time. My fingers are crossed.
I've been dodging Covid for the whole time it's been ravaging its way up, down and around the country. Clearly I've not been hiding from it; in so much as I've gone out to places like work and pubs & bars, but I have continued to avoid crowded indoor places, and wear a mask when I am on public transport and shopping in supermarkets and the like.
A couple of times last weekend though I went out unintentionally without a mask and travelled on a train (once) and bus (three times). This was because of the hot weather meaning I wasn't with my usual jacket and/or I was still in my shorts (whilst my masks remained at home in my jackets and jeans). It's either God's way of telling me not to wear shorts and to always stick with my go to leather jackets – or it could just be down to me remembering every time I get to the door to check for "phone-keys-wallet… AND mask." The only time I was in a moderately busy room was the open mic on Thursday night in the Belvedere. The subsequent mics on Sunday and Monday were both very quiet and well ventilated. I tested positive for Covid with a Lateral Flow Test (LFT) on the following Thursday and my suspicion is that I've picked it up on one of my No.17 bus journeys, where you can't help but sit close to people for half an hour or so. It's a lot easier to find space and avoid people in town that it is on a bus. But who knows?
I've purposely avoided busy places in the main, with the odd exception for short periods – like the periodically busy/calm cycle whilst standing in the Grapes on a Friday night – and during the League Cup Final earlier in the year. The city's pubs have been much quieter than pre-pandemic for several reasons no doubt: eg the habits of people now used to sitting at home with some cans, the desire of people to avoid crowds, and the ever growing costs of life in general. So pubs have really not been a fearful place (at least my type of ale pubs) for meeting in over crowded atmospheres with challenging ventilation issues. And it's been easy to move on to quieter places within a hostelry or to another if I was concerned about it.
Whilst I've been carrying on with life I hardly know a soul who hasn't had the disease. And many have had it multiple times. I know I've been lucky not to have picked it up before.
A friend very recently managed to pass me a few boxes of LFTs which was much appreciated at the time – and even more so now. On Monday or Tuesday I began to feel a bit of a dry throat and then had two days of a very runny nose. I'm not usually one for getting colds, and although I sometimes (once ever three years or so) suffer a little from hay fever, I decided to test daily; as the sore throat in particular was unusual.
It was negative for the first few days but as the test on Thursday emerged to taunt me with the strident line, stating I was not in fact invulnerable to this virus, I was more than disappointed but was not surprised. It's set me up for an uncertain week or so. First though, because of my MS, I was categorised as a high risk and had been provided with a PCR test to use and send off in the event of a positive LFT. So on Friday morning I duly took the test and found a Priority Postbox.
In the meantime I'd completed the NHS reporting of the LFT and texts started to come through from that. The way they were worded were typical of the confusion of ambiguous statements. They also kind of indicated that the PCR was a bit of a waste of time in so much as they already stated that the ball could well be rolling with respect to antivirals notwithstanding the PCR result. Not sure whether this is because of a change in stance since sending out the PCRs or not – things by necessity are understandably changing all the time. But I was glad I'd made the effort to get the test done and sent in any case as surely the more data they have the better.
In the afternoon I got a call from my own GP to say that they'd seen my LFT result and she checked a few things re dates and symptoms etc. I must say I was actually impressed that the national system had flagged up the result to the GP surgery and that they had been able to follow it up so quickly. You sometimes assume these things just get lost in a black hole. But credit given where credit is due.
She said that I may be entitled to get antivirals. I told her that I'd had a text saying as much too. She confirmed that she'd fill in a form from her side which may increase the chances as she wasn't sure how the weekends were being served by the people dealing with things at the moment. I agreed to her doing that. In addition she said they should be able to supply a finger oxygen meter, which I definitely welcomed.
Now it's a case of waiting for the PCR result to be texted (I'm assuming Monday) and to deal with any follow up phone calls from the NHS on antivirals and the oximeter.
Whilst I did the PCR on Friday, I didn't bother doing another LFT. It was still going to positive just one day after the first after all. So I did my second one this morning (Saturday). Again it was positive – and if anything a slightly darker band. I wasn't feeling any worse though. I'll just have to see how many days it'll be…
In general my Covid episode has been:
Bit of a dry/sore throat - Monday on (first noticeable symptom)
Very runny nose - Monday on
Phlegm on the chest - Tuesday onwards
Some fever - Tuesday onwards
Stuffy head/slight headache - Tuesday on
Positive LFT - Thursday (30th Jun) - had negative LFTs Monday-Wednesday
Runny nose thankfully lasted only a couple of days
Phlegm has decreased each day and isn't that noticeable currently (Saturday)
Stuffy head and slight fever hasn't changed much, possibly slight dehydration affecting my head but am trying to keep on top of that.
In fact I think Tuesday/Wednesday morning was the worst of it.
I'm not intending to go out of the house much at all and when I do eg to a shop, I'll wear a mask and get in and out without hanging about. I've got enough food and drink for the weekend – if I do need anything in the next few days it'll probably only be a couple of pints of milk. Sadly there will be no social time. It's all a bit of a lottery when the tests may start to give favourable results. I've had mates okay after five days or so and others well over double that. I fear I am going to be so disappointed next Wednesday – I've got tickets for the brilliant Felice Brothers at Leaf and I'm going to be gutted if I'm not negative by then (in all probability I'll end up having to pass my ticket on to someone else). That will be really disappointing.
Next Friday I was supposed to be going to Bishop's Castle for our annual Shropshire pilgrimage. It could be a close call too – but in any case I've heard a couple of dubious comments from others that our trip may be cancelled anyway! I'll be doubly gutted to miss out on a great gig and boss camping weekend in one week. But I guess the immediate concern is health; both mine and the 'not passing it on' thing.
Whilst I am isolating it is still okay to get out whilst avoiding people. The legalities and common sense permit it. This morning I popped out for half an hour on my bike. Boy I did find it hard work. I wasn't much slower than usual (anywhere between 9.5 and 10.5 mph is about standard for me) – and the park has those bloody gates which makes you get off your bike to get through them so timing is messed up. By the time I got back home I had a right sweat on. This should not really be the case. But I guess the body is trying to do its fighting the infection thing. I'm not entirely sure if exercising whilst fighting an infection is the right thing or the exact opposite of it. Perhaps I should use the doubt as an excuse to sit around and do nothing. I do wonder whether my O2 stats will be right or not, and I do hope I get given a meter this week to check that out.
In summary, (besides being a bugger to finally succumb to this damnable disease) I'm doing okay. The phlegm was horrible for a day or so, the runny nose too (but people with hay fever this year have had it much worse), and the heavy head is a bit of an annoyance. The main thing is the fever. It's not that high, but it doesn't take much to overheat me. I'll have to route around for where I've put my thermometer to see what my temperatures are trending at. I am quite tired too. But when you get a fever you get tired so hopefully it's just that. I really want to be better by Wednesday so that I can go to a gig. For that I am a hopeful loon, but not an expectant one. As for Bishop's Castle, that is apparently anyones guess.
Lastly, but I guess most importantly, is how this may affect my MS. The biggest fear from any change in circumstances is that it preludes a relapse. There is no reason to think it will, but it could also be argued that there is no reason to say that it won't. Both Covid and MS are such contrary unpredictable bastards. Of course the hope is that it makes not a jot of difference at this time. My fingers are crossed.
An LFT Surprise
04/04/22 16:01
An LFT Surprise - and An Erroneous Injection
Last week I tried daily to get another pack of Covid LFTs via the website and by calling in on several chemists. I failed on all counts. This morning though I received a box in the post. So I guess they have decided to post them out unbidden in the first instance to those they consider at a higher risk - and MS is within that. It's a strange situation as I'm sure some people with MS are a lot higher risk than others - especially those on drugs which suppress the immune system. Thankfully I'm not on those drugs currently. Copaxone does not suppress the immune system, which is one of the reasons I chose the injection rather than the tablets originally.
I am not sure if having MS makes you 'immunosuppressed' per se. I mean your body is attacking itself, but it is the coating on the nerve cells that are attacked. I'm not entirely sure that that is the same thing. Ho hum. I think I need to do a bit more reading around it.
I took the opportunity to do another test this morning and saw that one wonderful line was unaccompanied. I'm continuing to wear a face mask on public transport and in shops, but confident enough to go to bars and restaurants where I don't use them. I know this confuses some people, but I'm comfortable with it. I'm not generally is small places and they're not often packed - and ventilation is usually pretty good. So far I've never been ill as far as I know; and I am yet to test positive with the LFTs (or the various tests I had when I was in the hospital being diagnosed with MS). Continued testing will be great. And despite what people think, it's not just a cold - and I would feel so guilty if I was the cause of someone else getting it who could no longer visit an elderly relative - or even just go on holiday. The government's messaging about Covid is so confused for people (I dare say by design). Telling people that they should isolate but don't have to is a nonsense. Yeah, but no but…
Made my first mistake with Copaxone last week when I forgot to change the depth of the auto injector. I ended up injecting it at 4mm instead of 8mm into my belly. It was too shallow for a subcutaneous injection. I won't make the mistake again. At least I'll hope not to.
Last week I tried daily to get another pack of Covid LFTs via the website and by calling in on several chemists. I failed on all counts. This morning though I received a box in the post. So I guess they have decided to post them out unbidden in the first instance to those they consider at a higher risk - and MS is within that. It's a strange situation as I'm sure some people with MS are a lot higher risk than others - especially those on drugs which suppress the immune system. Thankfully I'm not on those drugs currently. Copaxone does not suppress the immune system, which is one of the reasons I chose the injection rather than the tablets originally.
I am not sure if having MS makes you 'immunosuppressed' per se. I mean your body is attacking itself, but it is the coating on the nerve cells that are attacked. I'm not entirely sure that that is the same thing. Ho hum. I think I need to do a bit more reading around it.
I took the opportunity to do another test this morning and saw that one wonderful line was unaccompanied. I'm continuing to wear a face mask on public transport and in shops, but confident enough to go to bars and restaurants where I don't use them. I know this confuses some people, but I'm comfortable with it. I'm not generally is small places and they're not often packed - and ventilation is usually pretty good. So far I've never been ill as far as I know; and I am yet to test positive with the LFTs (or the various tests I had when I was in the hospital being diagnosed with MS). Continued testing will be great. And despite what people think, it's not just a cold - and I would feel so guilty if I was the cause of someone else getting it who could no longer visit an elderly relative - or even just go on holiday. The government's messaging about Covid is so confused for people (I dare say by design). Telling people that they should isolate but don't have to is a nonsense. Yeah, but no but…
Made my first mistake with Copaxone last week when I forgot to change the depth of the auto injector. I ended up injecting it at 4mm instead of 8mm into my belly. It was too shallow for a subcutaneous injection. I won't make the mistake again. At least I'll hope not to.
A 3 Yearly Reminder of a Podgy Period
25/03/22 17:48
It was only just over a year ago I got diagnosed as having Multiple Sclerosis. I reported this after a few weeks to the DVLA and they wrote back a couple of times to say they were looking at it. In the meantime my licence stood as it was. Finally about a year later I've had a letter telling me I will be transferred to a three year Medical Licence. The medical licences apparently run for either 1, 2 or 3 years. So I guess it's the least in your face one.I can no longer drive buses or lorries without appealing it. It doesn't change for the kind of thing I may want it for (i.e. a car, a van, or a motorbike). But still it's a thing I guess which doesn't affect everyone and it makes you think.
Had to send my Driving Licence back today then and they'll issue the new one and then every three years afterwards - if necessary through consultation with my doctors, Hopefully they'll be joined up enough to contact my MS doctor rather than my GP, because my GP doesn't know diddly squat about the MS other than being copied in on some letters.
My driving licence dates back a while. And my photo has me caught in the headlights of a podgy phase. A new licence would be a positive thing. Apart from they haven't asked me to add an up to date photo. So it seems if I have to get a new licence issued every three years I'm gonna be stuck with the podgy period.
Had to send my Driving Licence back today then and they'll issue the new one and then every three years afterwards - if necessary through consultation with my doctors, Hopefully they'll be joined up enough to contact my MS doctor rather than my GP, because my GP doesn't know diddly squat about the MS other than being copied in on some letters.
My driving licence dates back a while. And my photo has me caught in the headlights of a podgy phase. A new licence would be a positive thing. Apart from they haven't asked me to add an up to date photo. So it seems if I have to get a new licence issued every three years I'm gonna be stuck with the podgy period.
Dr. Appointment
10/02/22 13:17
Oh my, it has been five months since I've put anything in this Health section of the website. That, my friends, is a good thing as it basically means that things have been moving along fine with regard to the MS. My diagnosis was eleven months ago. This time last year, pre-diagnosis, I was having the frightening problem of not being able to feel anything much at all from my waist down to my toes and was worrying that I had a brain tumour. Now I've not got anything severe at all: some minor pins and needles in the feet and the very occasional slight MS hug malarkey. The only thing I really notice day to day is a reduced bladder capacity resulting in more frequent – and sometimes hurried! – visits to dewater. It's not usually a problem; though if I think I might want to go then I should definitely should take the next opportunity!
Anyways, today I went to the Walton Centre to see my MS Doctor. The last time I saw him in person was when I was in the hospital bed and he was giving me the news of my diagnosis following the MRIs. Other than that I've had one Zoom call with him (and a student), and I've had two or three calls from the Walton Centre MS nurses.
The actual appointment with my Dr – and of course a student – went well. I reported my current and recent (medium term) condition i.e. that I was probably fitter than I had been for years, having taken on a physical job, and that I was also lighter than I've been for several/many years. He did some standard tests: walk toe to heel, hands out and touch your nose without looking, pushing legs/arms against his pushes, checking feelings in feet and banging the knees with a nobbly hammer and all that kind of thing. I'm not sure what the pass score was but I think I'm pretty sure I blitzed it.
The Doc asked if I had any questions and I didn't really apart from to ask if there was much happening with regard to understanding the disease. He laughed a little and said MS was one of the most studied neurological diseases but that they really didn't understand a lot about the whole thing – including why some people get worse attacks than others, or why the frequency varied so much etc. He said the Walton Centre were likely to get funding into a study looking into some aspects of that (I think with the consideration that there is a genetic component to it). I wasn't asked at this time, but of course I'd be happy to get involved with any study (think it will be largely through blood tests). Other than that he said progress was basically incremental.
All in all though it was a very quick (about ten minutes) appointment. Partly of course because things are progressing smoothy at the moment – and long may that continue. At the end of the meeting he suggested meeting one of the MS Nurses as even if I didn't really have any questions it was good to put a face to a name after all the telephone only contact. I took the opportunity and had a nice face to face meeting with Jenni – and MS nurse with specialty in movement disorders. She didn't have anything to add as things are going well at the moment. She did say exercise was really good so the physical job is definitely a positive thing. As far as putting a face to a name it was actually just half a face for now as we were masked up. Perhaps by the time I need to see the doc or nurse again we'll be living in a post-mask era. Perhaps.
Onwards and upwards.
Anyways, today I went to the Walton Centre to see my MS Doctor. The last time I saw him in person was when I was in the hospital bed and he was giving me the news of my diagnosis following the MRIs. Other than that I've had one Zoom call with him (and a student), and I've had two or three calls from the Walton Centre MS nurses.
The actual appointment with my Dr – and of course a student – went well. I reported my current and recent (medium term) condition i.e. that I was probably fitter than I had been for years, having taken on a physical job, and that I was also lighter than I've been for several/many years. He did some standard tests: walk toe to heel, hands out and touch your nose without looking, pushing legs/arms against his pushes, checking feelings in feet and banging the knees with a nobbly hammer and all that kind of thing. I'm not sure what the pass score was but I think I'm pretty sure I blitzed it.
The Doc asked if I had any questions and I didn't really apart from to ask if there was much happening with regard to understanding the disease. He laughed a little and said MS was one of the most studied neurological diseases but that they really didn't understand a lot about the whole thing – including why some people get worse attacks than others, or why the frequency varied so much etc. He said the Walton Centre were likely to get funding into a study looking into some aspects of that (I think with the consideration that there is a genetic component to it). I wasn't asked at this time, but of course I'd be happy to get involved with any study (think it will be largely through blood tests). Other than that he said progress was basically incremental.
All in all though it was a very quick (about ten minutes) appointment. Partly of course because things are progressing smoothy at the moment – and long may that continue. At the end of the meeting he suggested meeting one of the MS Nurses as even if I didn't really have any questions it was good to put a face to a name after all the telephone only contact. I took the opportunity and had a nice face to face meeting with Jenni – and MS nurse with specialty in movement disorders. She didn't have anything to add as things are going well at the moment. She did say exercise was really good so the physical job is definitely a positive thing. As far as putting a face to a name it was actually just half a face for now as we were masked up. Perhaps by the time I need to see the doc or nurse again we'll be living in a post-mask era. Perhaps.
Onwards and upwards.