Before I start this week's blog, I need to warn you that I am listening to the Dead Kennedys, so I might end up trying to overthrow the government or something whilst I am writing.
Last week I tempted fate about my lack of falls and guess what? Yep, I fell over. I was drunk though, and as much as I don't want it to count, I'm going to include it. That's twice I've hit the deck this month which is good going for me, with only a week to go.
I'm not going to declare that I'll get to March without another stack though, because my legs are really bad at present. I caught a sickness bug. This alone is nothing to be concerned about, but any virus I get seems to exacerbate (did I spell that right?) my MS, and my legs in particular. I was completely paralysed from the waist down and I had to spend a night in hospital with some lovely nurses. You've got to take the positives out of any situation. My glass is half full, you know. Well until my wife reads this and empties the half full glass over my head!
I'll be fine in a day or two. The virus is out of my system now, so my symptoms will be back to a more manageable level in no time. They better had anyway, I'm going to watch West Ham play Spurs on Monday. I don't care how bad my legs are - I am there.
I'm thinking about renaming my blog Pills, Thrills and NO Bellyaches as I haven't had a single side effect in the whole time I've been on it, which is almost 6 months. If I change it, I won't have to worry about a potential plagiarism lawsuit from the Happy Mondays lawyers. That's where I nicked the name from after all.
My Gilenya turned up last week, but I didn't ask the driver Dave W what the W stood for like I said I was going to a few months ago - because I forget! Don't tut at me, I can't help it Don't blame me, blame my lesions. I have got MS, you know.
All jokes aside, I do feel like my cognition has improved a bit of late. That could be the lack of fatigue coming into play again. I don't know, but that would make sense, the less fatigue, the less the cog-fog.
Fatigue might be invisible to those on the outside without MS, but on the inside, it's a cruel symptom that hampers us in so many different ways. I wouldn't wish MS on my worst enemy. What am I saying? Of course I would. ;-)
Have a nice weekend everyone.
Dan
Friday, 22 February 2013
Friday, 15 February 2013
Week 23
Last week, I bored you to the brink of death because I was going on about my driving. Well I'm going to bore you on the subject for a few more minutes.
I get my cars on the Motability scheme. Instead of getting Disability Living Allowance money for mobility, I get a new car every 3 years on a lease hire contract. Because my mobility car was written off, the 3 year contract I was halfway through got terminated and you go through the process of picking a car from scratch.
Since the accident, I've been driving around in a hire car that Motability arranged for me. I believe I have this car until I take delivery of my new car sometime next month. I found out the other week that as I am not officially in possession of a Motability car, I am entitled to the DLA money too! Fantastic, eh? You just take your time adapting the new car Peugeot. No rush.
At the time of writing, I've only had one fall in February. We're almost halfway through, so I'm patting myself on the back here. You're probably thinking I'm tempting fate here, and I suppose I am, but I don't believe in fate and should I hit the deck before I post this blog, I won't think it was fate biting me on the arse. It would've happened regardless of if I had written this paragraph, or not. (Fingers crossed)
You want to know about Gilenya, right? Okay then, I've already said how my bowels have improved so much of late *insert your choice of shit joke here* (pun intended). I empty my bowels pretty much every day now, which also has benefits because you don't have all those toxins festering inside your body for a week, 10 days, or however long it takes for the ol' bowels to move. I am convinced this improvement IS because of the Gilenya. It's my body after all.
Also my bladder is still tip top. The other day, I needed to wee twice in one day! Yeah, I know only 2 times. I spent a couple of hours in a car and I didn't take in any fluid, but I more than made up for it in the evening with Vodka and red bull. Yes, caffeine AND alcohol in the same glass! 2 elements that would normally have me running (if only!) to the toilet the second either entered my bladder.
I do apologise about the odd profanity sneaking into this blog, but I can't help it, it's the MS!
Be well, people.
Dan
I get my cars on the Motability scheme. Instead of getting Disability Living Allowance money for mobility, I get a new car every 3 years on a lease hire contract. Because my mobility car was written off, the 3 year contract I was halfway through got terminated and you go through the process of picking a car from scratch.
Since the accident, I've been driving around in a hire car that Motability arranged for me. I believe I have this car until I take delivery of my new car sometime next month. I found out the other week that as I am not officially in possession of a Motability car, I am entitled to the DLA money too! Fantastic, eh? You just take your time adapting the new car Peugeot. No rush.
At the time of writing, I've only had one fall in February. We're almost halfway through, so I'm patting myself on the back here. You're probably thinking I'm tempting fate here, and I suppose I am, but I don't believe in fate and should I hit the deck before I post this blog, I won't think it was fate biting me on the arse. It would've happened regardless of if I had written this paragraph, or not. (Fingers crossed)
You want to know about Gilenya, right? Okay then, I've already said how my bowels have improved so much of late *insert your choice of shit joke here* (pun intended). I empty my bowels pretty much every day now, which also has benefits because you don't have all those toxins festering inside your body for a week, 10 days, or however long it takes for the ol' bowels to move. I am convinced this improvement IS because of the Gilenya. It's my body after all.
Also my bladder is still tip top. The other day, I needed to wee twice in one day! Yeah, I know only 2 times. I spent a couple of hours in a car and I didn't take in any fluid, but I more than made up for it in the evening with Vodka and red bull. Yes, caffeine AND alcohol in the same glass! 2 elements that would normally have me running (if only!) to the toilet the second either entered my bladder.
I do apologise about the odd profanity sneaking into this blog, but I can't help it, it's the MS!
Be well, people.
Dan
Thursday, 7 February 2013
Week 22
My last blog came across as mildly melancholic. I do apologise. I suppose I shouldn'tbe listening to Nirvana or Lana Del Ray when I'm writing. Oh well.
Don't worry, MS hasn't managed to get inside my head. Depression is a very common symptom of MS, and that is one battle I fight every day. And every day I win that battle and I'll continue to win that battle every day.
My walking is slowly improving - I'm not thinking about the London Marathon just yet. Maybe next year, but don't hold me to that. This is more than likely because I've got my exercise regime down to a tee. At first they were making me quite rough, but now I'm feeling the benefit. I had a week where I did them, regardless of how bad I was the next day. I spent 3 days where my body was ruined because of the exercising, but I've come through the other end feeling the benefit now.
Also my driving has improved. Yeah, yeah, I know, you're thinking that I'm talking rubbish because I wrote my car off before Christmas. Well let me tell you the accident was the other driver's fault, and if it hadn't been, it wouldn't have been my fault either because I've got MS!
The car(s) that I drive have been adapted. They have the 'push and pull' hand controls fitted, so that when my legs are tired and 'drop foot' kicks in (oh, the irony), I can take them away from the pedals and drive with my hands. I've been driving like this for a few years now and before I was hospitalised in June, I could drive between half a mile to five before I'd start going back and forth using the hand controls as well as the foot pedals. The last month or so, I've been driving to Chelmsford using only the foot pedals. Now that is a 25 mile journey from Southend. Is the Gilenya helping me? I dunno.
The thing is though, as my body is slowly deteriorating, my ability to do things becomes less and less, but some things have improved. My fatigue, my bladder, my bowels and now my ability to control my car with the pedals. I'm wondering if the less the fatigue, the less the drop foot - thus making me to drive the car 'normally' for longer? We all know that fatigue affects us physically so, maybe, just maybe the Gilenya is helping me as well as the exercises.
If I were a scientist, I would stop the exercises and see if it is the medication, or vice-versa if I were a physiotherapist, but I'm neither, so I won't, so you're out of luck. Sorry.
Have a good weekend, people.
Dan
Don't worry, MS hasn't managed to get inside my head. Depression is a very common symptom of MS, and that is one battle I fight every day. And every day I win that battle and I'll continue to win that battle every day.
My walking is slowly improving - I'm not thinking about the London Marathon just yet. Maybe next year, but don't hold me to that. This is more than likely because I've got my exercise regime down to a tee. At first they were making me quite rough, but now I'm feeling the benefit. I had a week where I did them, regardless of how bad I was the next day. I spent 3 days where my body was ruined because of the exercising, but I've come through the other end feeling the benefit now.
Also my driving has improved. Yeah, yeah, I know, you're thinking that I'm talking rubbish because I wrote my car off before Christmas. Well let me tell you the accident was the other driver's fault, and if it hadn't been, it wouldn't have been my fault either because I've got MS!
The car(s) that I drive have been adapted. They have the 'push and pull' hand controls fitted, so that when my legs are tired and 'drop foot' kicks in (oh, the irony), I can take them away from the pedals and drive with my hands. I've been driving like this for a few years now and before I was hospitalised in June, I could drive between half a mile to five before I'd start going back and forth using the hand controls as well as the foot pedals. The last month or so, I've been driving to Chelmsford using only the foot pedals. Now that is a 25 mile journey from Southend. Is the Gilenya helping me? I dunno.
The thing is though, as my body is slowly deteriorating, my ability to do things becomes less and less, but some things have improved. My fatigue, my bladder, my bowels and now my ability to control my car with the pedals. I'm wondering if the less the fatigue, the less the drop foot - thus making me to drive the car 'normally' for longer? We all know that fatigue affects us physically so, maybe, just maybe the Gilenya is helping me as well as the exercises.
If I were a scientist, I would stop the exercises and see if it is the medication, or vice-versa if I were a physiotherapist, but I'm neither, so I won't, so you're out of luck. Sorry.
Have a good weekend, people.
Dan
Thursday, 31 January 2013
Week 21
In last weeks Blog I put up a link to the advert I did for Coloplast. When I say link, I mean the URL. For some reason, Blogger didn't convert it into a hyperlink. If you couldn't be bothered to copy and paste it into your address bar, fear not, as you didn't miss much. I don't even know why I posted it, to be honest. It has nothing to do with Gilenya. Maybe I was full of my own self-importance that day.
To continue my theme of self-importance, I am going to stick up a picture (X-ray) of my arm. I broke it in the summer when I fell over one evening - sober. It needed an operation. They put a plate in it, to hold the bone together. I spent almost a month in hospital and for the majority of that time, they didn't move me. When they eventually got the physio involved, I was in a right mess. I couldn't even stand up. In those 3 weeks, the muscles in my legs had withered away. I thought things were hard before the accident - I used a crutch to walk when I was outside the house, but now they were really difficult. I have managed to get some of the strength back, but it is taking a long time.
Since I came out of hospital, I've had a relapse. It was probably the trauma of the fall that triggered it. Unfortunately, the oral steroids only worked for as long as I was taking them. There seems to be a fair bit leftover too. Disease progression. I am using my wheelchair a fair bit when I'm out of the house now. Oh well, what can you do, eh? We just have to get on with it; to grin and bare it. Life could be so much worse. My children are both well, and happy and that's my priority.
Still, my fatigue is minimal, so I could be a whole lot worse. In fact after a busy day - by my standards, I am laying here on the bed finishing this blog off. The time is 01:50 AM and I am wide awake.
Another bit of crap news that I do have is that I fell over twice on Saturday. Well, when I say fell, it wasn't a loss of balance issue, but just a case of my legs giving up, waving the white flag and me slumping to the floor. Both times involved me getting out of/ or into the car. Transferring issues! That's a total of 5 falls in January.
For my Physio, I've got some leg strengthening exercises as a part of it and I've been doing them religiously all week. I also do core stability and shoulder exercises as well. I can't manage the whole lot everyday, as it is too tiring, and if I do too much, I suffer the next day, so at the moment, I'm concentrating on just the legs for a short while. Lets see how I fare with my walking this weekend.
Have a good one.
Dan
To continue my theme of self-importance, I am going to stick up a picture (X-ray) of my arm. I broke it in the summer when I fell over one evening - sober. It needed an operation. They put a plate in it, to hold the bone together. I spent almost a month in hospital and for the majority of that time, they didn't move me. When they eventually got the physio involved, I was in a right mess. I couldn't even stand up. In those 3 weeks, the muscles in my legs had withered away. I thought things were hard before the accident - I used a crutch to walk when I was outside the house, but now they were really difficult. I have managed to get some of the strength back, but it is taking a long time.
Since I came out of hospital, I've had a relapse. It was probably the trauma of the fall that triggered it. Unfortunately, the oral steroids only worked for as long as I was taking them. There seems to be a fair bit leftover too. Disease progression. I am using my wheelchair a fair bit when I'm out of the house now. Oh well, what can you do, eh? We just have to get on with it; to grin and bare it. Life could be so much worse. My children are both well, and happy and that's my priority.
Still, my fatigue is minimal, so I could be a whole lot worse. In fact after a busy day - by my standards, I am laying here on the bed finishing this blog off. The time is 01:50 AM and I am wide awake.
Another bit of crap news that I do have is that I fell over twice on Saturday. Well, when I say fell, it wasn't a loss of balance issue, but just a case of my legs giving up, waving the white flag and me slumping to the floor. Both times involved me getting out of/ or into the car. Transferring issues! That's a total of 5 falls in January.
For my Physio, I've got some leg strengthening exercises as a part of it and I've been doing them religiously all week. I also do core stability and shoulder exercises as well. I can't manage the whole lot everyday, as it is too tiring, and if I do too much, I suffer the next day, so at the moment, I'm concentrating on just the legs for a short while. Lets see how I fare with my walking this weekend.
Have a good one.
Dan
Thursday, 24 January 2013
Week 20
Going back to what I was saying last week about my minimal fatigue, there is one other thing I was going to tell you, but I forgot. Don't blame me, I've got MS.
I was taking Vitamin B12 tablets to help me manage my fatigue. They were helping a marginal amount. Not a massive amount, but for what they cost, it was worth taking them. Obviously, as my fatigue started improving, I decided to lay off them and see if I noticed any dip in my newly discovered alertness. I was nearing the end of the bottle anyway, so I decided to not get anymore for a while and see how I got on. I am happy to report that I have noticed no change with my fatigue at all. So all good news there then. And that's two less tablets I take each day as well. Good good.
I know that some GPs give out monthly vitamin B12 injections. I had told myself that I was going to ask my doctor about it the next time I was round there. Notice that was all in the past tense? I don't need to now. I still will though. Why not? For all I know, I might even be able to get out of bed before 9 o'clock in the morning without an alarm!! I'll let you know.
Before my legs gave up on me, I used to work in London. I had to be there at 7AM, so as I live about 50 miles to the east of the city in sunny Southend, it meant getting up a quarter to five - or quarter past after I'd hit the 'snooze' button umpteen times. Snoozing apart, I had no real problem getting up at this unearthly hour, but now, I would only get up that early if I had wet the bed! Fortunately, that is one symptom I don't have to endure, as I empty my bladder completely, thanks to the 'Speedicath Compact Male Catheter by Coloplast'I should get some fees for endorsing their product, don't you think? I did do an advert for them a year of two ago. If I remember, I'll put a link to it up at the bottom of the page.
I've been keeping a record of my falls recently - yeah I know, I've got too much time on my hands! Since the start of the year, I've only had 4 falls. Only, You're thinking, right? Well, coming from someone who was practically falling over every when I came out of hospital in July, I'm quite happy with that. You can even class one of them as not counting, as it was the Guinness that made me fall over.
I'm not putting this down to the Gilenya though. I've got a daily (mostly) exercise routine involving, core stability, leg strengthening and ones for my broken arm.
Regards,
Dan
http://www.coloplast.co.uk/products/continencecare/speedicathcompactmalepl2/todomore/
The link plays the video on my laptop, but not on my phone, by the way.
I was taking Vitamin B12 tablets to help me manage my fatigue. They were helping a marginal amount. Not a massive amount, but for what they cost, it was worth taking them. Obviously, as my fatigue started improving, I decided to lay off them and see if I noticed any dip in my newly discovered alertness. I was nearing the end of the bottle anyway, so I decided to not get anymore for a while and see how I got on. I am happy to report that I have noticed no change with my fatigue at all. So all good news there then. And that's two less tablets I take each day as well. Good good.
I know that some GPs give out monthly vitamin B12 injections. I had told myself that I was going to ask my doctor about it the next time I was round there. Notice that was all in the past tense? I don't need to now. I still will though. Why not? For all I know, I might even be able to get out of bed before 9 o'clock in the morning without an alarm!! I'll let you know.
Before my legs gave up on me, I used to work in London. I had to be there at 7AM, so as I live about 50 miles to the east of the city in sunny Southend, it meant getting up a quarter to five - or quarter past after I'd hit the 'snooze' button umpteen times. Snoozing apart, I had no real problem getting up at this unearthly hour, but now, I would only get up that early if I had wet the bed! Fortunately, that is one symptom I don't have to endure, as I empty my bladder completely, thanks to the 'Speedicath Compact Male Catheter by Coloplast'I should get some fees for endorsing their product, don't you think? I did do an advert for them a year of two ago. If I remember, I'll put a link to it up at the bottom of the page.
I've been keeping a record of my falls recently - yeah I know, I've got too much time on my hands! Since the start of the year, I've only had 4 falls. Only, You're thinking, right? Well, coming from someone who was practically falling over every when I came out of hospital in July, I'm quite happy with that. You can even class one of them as not counting, as it was the Guinness that made me fall over.
I'm not putting this down to the Gilenya though. I've got a daily (mostly) exercise routine involving, core stability, leg strengthening and ones for my broken arm.
Regards,
Dan
http://www.coloplast.co.uk/products/continencecare/speedicathcompactmalepl2/todomore/
The link plays the video on my laptop, but not on my phone, by the way.
Friday, 18 January 2013
Week 19
Over the last month and a bit, I have noticed a considerable improvement in my fatigue. Now I know last week, I mentioned how my Amitriptyline reduction had helped me with my cognition, but that's not the same as fatigue.
Fatigue if you have MS, you will know only too well isn't just a case of being over tired. It's physical too. It's like the muscles in your body join your brain and go 'on strike' and any kind of movement becomes so much more laboured and tiring. That's a vicious circle for you.
Anyway forget all that. Fatigue - or lack of. I am convinced that the disappearance of said fatigue is because of the Gilenya. Gone are the days when I would fall asleep on the settee after lunch. Forget having to go and lay down on the bed in the afternoon for forty winks. I don't even have a single 'power nap' either. Who made that stupid saying up anyway?
I experienced the very same feeling a couple of months after I started taking Tysabri. As the two medications work in a similar way, I see no reason why the Gilenya shouldn't have the same positive effects.
At my recent clinic appointment, I asked my consultant her opinion. She told me that my fatigue situation could well be because of the Gilenya, but she couldn't confirm its relevance She couldn't give me any information about improvements because of the drug as apparently, I was the second (or 3rd) patient at the Royal London Hospital to go on the drug and (I think) they were the first hospital to start administering it since its re-issue. Ok, fair enough, but thanks for, erm, nothing.
That might sound a bit harsh; the data isn't there yet as it is such early days, but there were a good few years of trials, and don't forget it was licensed once before, but they had to withdraw it for safety issues. And it is administered globally. Think I'll have to do a bit of research myself on this world wide net.
If they are looking towards me for their data, there's at least one person whose fatigue is virtually non-existent because of Gilenya.
Dan.
Fatigue if you have MS, you will know only too well isn't just a case of being over tired. It's physical too. It's like the muscles in your body join your brain and go 'on strike' and any kind of movement becomes so much more laboured and tiring. That's a vicious circle for you.
Anyway forget all that. Fatigue - or lack of. I am convinced that the disappearance of said fatigue is because of the Gilenya. Gone are the days when I would fall asleep on the settee after lunch. Forget having to go and lay down on the bed in the afternoon for forty winks. I don't even have a single 'power nap' either. Who made that stupid saying up anyway?
I experienced the very same feeling a couple of months after I started taking Tysabri. As the two medications work in a similar way, I see no reason why the Gilenya shouldn't have the same positive effects.
At my recent clinic appointment, I asked my consultant her opinion. She told me that my fatigue situation could well be because of the Gilenya, but she couldn't confirm its relevance She couldn't give me any information about improvements because of the drug as apparently, I was the second (or 3rd) patient at the Royal London Hospital to go on the drug and (I think) they were the first hospital to start administering it since its re-issue. Ok, fair enough, but thanks for, erm, nothing.
That might sound a bit harsh; the data isn't there yet as it is such early days, but there were a good few years of trials, and don't forget it was licensed once before, but they had to withdraw it for safety issues. And it is administered globally. Think I'll have to do a bit of research myself on this world wide net.
If they are looking towards me for their data, there's at least one person whose fatigue is virtually non-existent because of Gilenya.
Dan.
Saturday, 12 January 2013
Week 18
How are you all? I hope you're enjoying normality after Christmas and new year like I am.
There is something I want to tell you, and that is about my minimal neuropathic (nerve) pain.
At the beginning of last year, I decided that I wanted to try and cut down on the drug I was taking for the stinging sensation I was getting in my legs. I was taking 50 mg of Amitriptyline of an evening.
I read somewhere that the side effects to this type of medication was cognitive issues. I do suffer from 'cog fog' and my memory is (and always was) pretty bad. I decided that if I wanted to 'stop the rot' I would have to endure a bit of pain. I got myself down to a dose of 40mgs with ease. I didn't notice an increase in pain at all.
By the time I started on Gilenya, I had just started reducing down to 30 mgs with a bearable amount of nerve pain. Over the last few weeks, I've realised that my pain levels are pretty much non existent, so I'm going down to 20 at present.
Only a fool would credit the Gilenya with this because I was cutting back long before I started the new drug, but I found it surprisingly easy getting from 40 mg down to 30. I was in a bit of pain at first, but not too much. I seem to be getting down to 20 effortlessly too. But I can't help wondering if Gilenya has played a part in a subconscious way. I am feeling really positive about Gilenya and the changes I've noticed within my body and that must help. Or does that just make me a fool then?
Anyway, I feel a lot less cloudy within the confines of my tiny little mind now. I'm not condoning cutting down on your medication - well, I suppose I am, but I have an issue with the amount of pills I pop each day. Despite my Amitriptyline reduction, I still take 18 tablets (7 of which are vitamins) every day. Shake me and I rattle.
I was going to talk about Gilenya today, wasn't I? Next week I promise to. I'll tell you about my fatigue since I've been on the new medication.
Speak soon,
Dan
There is something I want to tell you, and that is about my minimal neuropathic (nerve) pain.
At the beginning of last year, I decided that I wanted to try and cut down on the drug I was taking for the stinging sensation I was getting in my legs. I was taking 50 mg of Amitriptyline of an evening.
I read somewhere that the side effects to this type of medication was cognitive issues. I do suffer from 'cog fog' and my memory is (and always was) pretty bad. I decided that if I wanted to 'stop the rot' I would have to endure a bit of pain. I got myself down to a dose of 40mgs with ease. I didn't notice an increase in pain at all.
By the time I started on Gilenya, I had just started reducing down to 30 mgs with a bearable amount of nerve pain. Over the last few weeks, I've realised that my pain levels are pretty much non existent, so I'm going down to 20 at present.
Only a fool would credit the Gilenya with this because I was cutting back long before I started the new drug, but I found it surprisingly easy getting from 40 mg down to 30. I was in a bit of pain at first, but not too much. I seem to be getting down to 20 effortlessly too. But I can't help wondering if Gilenya has played a part in a subconscious way. I am feeling really positive about Gilenya and the changes I've noticed within my body and that must help. Or does that just make me a fool then?
Anyway, I feel a lot less cloudy within the confines of my tiny little mind now. I'm not condoning cutting down on your medication - well, I suppose I am, but I have an issue with the amount of pills I pop each day. Despite my Amitriptyline reduction, I still take 18 tablets (7 of which are vitamins) every day. Shake me and I rattle.
I was going to talk about Gilenya today, wasn't I? Next week I promise to. I'll tell you about my fatigue since I've been on the new medication.
Speak soon,
Dan
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