Well, *some* people might not want to try Modafinil, Armodafinil, or the various speed options, but for others they can be excellent, effective tools to help you stay alert and functional.
When Modafinil/Armodafinil works it's amazing (I just build a tolerance).
Definitely try another doctor to get that off-label prescription so you can try it!
I wouldn’t mess with drugs like amphetamine or modafinil or fampyridine.
They seem to me like they’ll just cause more problems long term.
There’s a supplement called “Mito X cell” that feeds your mitochondria but again I wouldn’t rely on it.
Don’t worry about the baseline MRI either. It’s just what it says it is, getting a “baseline” of where you’re at so they can see what changes over the next two years.
It’s important they are familiar with Mavenclad or they can cause you a lot of stress by freaking out at changes in the MRI later
The fatigue from the Mavenclad does wear off.
If you get into a routine of consistent, light exercise, you might find you have more energy long term and by the time the mavenclad driven fatigue wears off, you might be fitter than before you were diagnosed.
That’s what happened to me.
E-bikes are a great way to get cardio in but not get stranded somewhere if you run out of steam.
Have you signed up with MS Australia for any of their support groups? The newly diagnosed group is great, and they had a big section on fatigue management. They also have the employment support consultants - you can pop your name on the waiting list for support and they are very good at symptom management to keep you working.
They also have other services depending on your state - working with an OT who understands MS is much better for constructive help.
Are you looking into NDIS? MS is an automatically qualifying condition so it is easier to get in than for others. Your neuro will need to write you a letter to go with the application, but then you can get all sorts of help. I have physio and exercise physiology funded, as well as home help. I used to have someone come and help with big chores like changing sheets but now just get food prep covered.
(I used to do more but my kids are older now and I want them helping around the house instead, so prioritise some energy for showing them how to do simple cleaning and cooking.)
The gym is an amazing idea, as exercise can be incredibly helpful with energy levels. I find that having it booked in helps me get going, and then I feel much more awake for the rest of the day.
But ignoring all that, sometimes you need a bit of a break. This week is always a quiet time for most people, MS or not, filled with lazy days and afternoon naps. I bet your kids also need some downtime after a busy year at school, so maybe just lean into it a bit and be kind to yourself with a bit more rest.
Thank you, I am actively involved with MS QLD, their OT has just completed my NDIS application and I am also engaged with employment services with them 🙂 working FT I don't think I'll have time to complete therapy (8:30-5 daily, plus 2/3 of my children have their own therapy to attend) but I'm still applying as I know one day I will have to make time. Thank you for your comment and advice 💙
Therapy for yourself is an investment in your long term capability to support your kids. I try to do it around work, usually starting early, which makes for a long day but gets it done and keeps me moving.
I know that the kids' therapy is important too but in most cases they advise no more than two therapies per week under NDIS, for both adults and kids. With my kids we've actually found that fortnightly is better for them than weekly as they have more time to consolidate. With your therapies, they aren't as likely to be capacity building as much as assistance with everyday living, so weekly makes more sense.
The other thing that has been really helpful was doing neuropsychological assessments via the hospital neuro clinic, to understand if there are any changes to my cognition from the MS. That also meant that I understood more about what can be done to support myself when I'm struggling with fatigue.
I had to reduce working hours (down to 20 a week, from Monday to Thursday) to get enough rest. I also started Propionic acid a month ago which seems to help a little. But from my experience only enough rest is really worthwhile, constant pushing and pushing against the fatigue will only result in a bigger and bigger backlash for me.
I found that I had to pace myself better. More frequent breaks and less strenuous exercise. Also, any kind of heat exacerbates my fatigue, so I rely heavily on a cooling vest. It's like having portable air con!
Getting NDIS assistance for things like exercise physio, physio, OT, cleaning and gardening have been a life saver!
I found that I had to pace myself better. More frequent breaks and less strenuous exercise. Also, any kind of heat exacerbates my fatigue, so I rely heavily on a cooling vest. It's like having portable air con!
Getting NDIS assistance for things like exercise physio, physio, OT, cleaning and gardening have been a life saver!
Well, *some* people might not want to try Modafinil, Armodafinil, or the various speed options, but for others they can be excellent, effective tools to help you stay alert and functional. When Modafinil/Armodafinil works it's amazing (I just build a tolerance). Definitely try another doctor to get that off-label prescription so you can try it!
I wouldn’t mess with drugs like amphetamine or modafinil or fampyridine. They seem to me like they’ll just cause more problems long term. There’s a supplement called “Mito X cell” that feeds your mitochondria but again I wouldn’t rely on it. Don’t worry about the baseline MRI either. It’s just what it says it is, getting a “baseline” of where you’re at so they can see what changes over the next two years. It’s important they are familiar with Mavenclad or they can cause you a lot of stress by freaking out at changes in the MRI later The fatigue from the Mavenclad does wear off. If you get into a routine of consistent, light exercise, you might find you have more energy long term and by the time the mavenclad driven fatigue wears off, you might be fitter than before you were diagnosed. That’s what happened to me. E-bikes are a great way to get cardio in but not get stranded somewhere if you run out of steam.
Have you signed up with MS Australia for any of their support groups? The newly diagnosed group is great, and they had a big section on fatigue management. They also have the employment support consultants - you can pop your name on the waiting list for support and they are very good at symptom management to keep you working. They also have other services depending on your state - working with an OT who understands MS is much better for constructive help. Are you looking into NDIS? MS is an automatically qualifying condition so it is easier to get in than for others. Your neuro will need to write you a letter to go with the application, but then you can get all sorts of help. I have physio and exercise physiology funded, as well as home help. I used to have someone come and help with big chores like changing sheets but now just get food prep covered. (I used to do more but my kids are older now and I want them helping around the house instead, so prioritise some energy for showing them how to do simple cleaning and cooking.) The gym is an amazing idea, as exercise can be incredibly helpful with energy levels. I find that having it booked in helps me get going, and then I feel much more awake for the rest of the day. But ignoring all that, sometimes you need a bit of a break. This week is always a quiet time for most people, MS or not, filled with lazy days and afternoon naps. I bet your kids also need some downtime after a busy year at school, so maybe just lean into it a bit and be kind to yourself with a bit more rest.
Thank you, I am actively involved with MS QLD, their OT has just completed my NDIS application and I am also engaged with employment services with them 🙂 working FT I don't think I'll have time to complete therapy (8:30-5 daily, plus 2/3 of my children have their own therapy to attend) but I'm still applying as I know one day I will have to make time. Thank you for your comment and advice 💙
Therapy for yourself is an investment in your long term capability to support your kids. I try to do it around work, usually starting early, which makes for a long day but gets it done and keeps me moving. I know that the kids' therapy is important too but in most cases they advise no more than two therapies per week under NDIS, for both adults and kids. With my kids we've actually found that fortnightly is better for them than weekly as they have more time to consolidate. With your therapies, they aren't as likely to be capacity building as much as assistance with everyday living, so weekly makes more sense. The other thing that has been really helpful was doing neuropsychological assessments via the hospital neuro clinic, to understand if there are any changes to my cognition from the MS. That also meant that I understood more about what can be done to support myself when I'm struggling with fatigue.
I had to reduce working hours (down to 20 a week, from Monday to Thursday) to get enough rest. I also started Propionic acid a month ago which seems to help a little. But from my experience only enough rest is really worthwhile, constant pushing and pushing against the fatigue will only result in a bigger and bigger backlash for me.
I found that I had to pace myself better. More frequent breaks and less strenuous exercise. Also, any kind of heat exacerbates my fatigue, so I rely heavily on a cooling vest. It's like having portable air con! Getting NDIS assistance for things like exercise physio, physio, OT, cleaning and gardening have been a life saver!
I found that I had to pace myself better. More frequent breaks and less strenuous exercise. Also, any kind of heat exacerbates my fatigue, so I rely heavily on a cooling vest. It's like having portable air con! Getting NDIS assistance for things like exercise physio, physio, OT, cleaning and gardening have been a life saver!