Disclaimer please read!
Disclaimer please read!
Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Ha- the cold never developed into a full blown thing, and although jet lagged I had a good time in the UK. I was able to do a lot more than I used to do when on Rebif, and generally feel better- though not this morning as I've been awake since 2:30 am due to jet lag.
Can't wait to get my blood tested to see if it is getting back towards normal, then I can get onto the trial.
Was in the UK to celebrate my 50th, so missed your birthday. Glad you had a good time.
Here in Tassie our latitude is so low that we effectively don't get any UViolet B at all in the middle of winter because of our angle to the sun relative to the atmosphere.
I have started taking 10,000IU D3 daily am now taking maintenance at 5,000IU.
In full summer sun and in swimmers we manufacture between 20,000-50,000IU in 20-30 minute's exposure. It is impossible to OD on natural D3 because sunlight will also destroy D3, thereby stabilising dosage. However, it is possible to overdo the supplementation. I would guess it would be sustained mega-dose to do this though.
Amber,
I'm going to post up next wednedsay on my progress thus far. I get a "D" level check every 3 months to keep an eyeball on my levels.
This last one will tell me what's happened during the dead of winter up here in Canberra. I started at 88, 3 after I started supplementing at 122...I'm shooting for at least 150 this time which should be good.
Regards
Sean
Thanks Helen
Yes the levels were good by 'normal' people standards. I am not due to have the blood test done until October, however I am seeing my neuro before then and will ask him about what I should be taking.
Think to be on the safe side I will start taking a supplement, just to bolster me through the winter and to make sure the bubs are getting enough. Is there any harm in me taking some without advice???
thanks heaps. love the chipmuks. fortunately my arms have had heaps of practice
had a good day and got spoilt rotten, as it should be.
cheers,
shaz
Amber, there is an recognised psychological condition for the 'winter blues', it's called rather appropriately S.A.D. - Seasonal Affective Disorder - and really seems to be related to lack of sunshine- the greyness seems to make people miserable.
You know the drum about Vitamin D and pregnancy especially as you are an MS Mum.
I think you said that you had you levels checked in March and they were 'good'. Does that mean good by current standards for 'normal' people or what seems to be required for MSers. THe advice often is to increase Vitamin D during the winter months due to lack of opportunity to be in the sun. The other factor to consider is that Melbourne has weaker sun than here in Brisvegas (if it ever appears!). The research literature seems to point to spring relapses, an interesting coincidence responding to the lower levels of Vitamin D over winter.
It's getting close to 6 months since you had your levels measured - might be prudent to check on them again if you haven't increased you dose. There are now 3 of you chewing up the vitamin D, never know those little ones might be Vitamin D hounds.
Keep well, all 3 of you.
Helen.
Hi Kim
So glad your finding your way around the site
This is second and third bubs (Twins)
Maybe I just have a bit of winter blues and I am over the clouds in the sky, just so want to make sure I keep my Vit D levels up. It is very important during preegnancy and after pregnancy that babies get enough Vit D because they have found a possible link to them developing MS later in life.
Hi There,
Firstly congrats on the pregnancy, hope all is going well.
Im not to savvy when it comes to Vitamin D etc... as im only now looking into taking suppliments.
I was pregnant last year with my first child and i was never placed on Vit D suppliments, i was tested and levels were normal but in saying that everyone is different.
I guess all you can do is follow the guidance of your ob and neuro.
Is this your first bub???
Kim
It's just the little boy baby that cracks me up! What a natural!
Helen.
I love that clip. It's just hilarious and so YOU Helen.
Love ya,
Jodi.
Hi Julie,
Well here is the link to the online support group.
http://mc2.vicnet.net.au/home/instmum/index.html
Most of the women on this forum are from Victoria but I am from Qld and it is the only online support group I could find. Once you register, you receive an email every time someone puts a post in the forum.
I've learned so much from this forum, honestly. So many different people and different situations but there are threads that are common to everyone.
I've also just last night purchased a couple of books that are specifically recommended for instant mums and they look fantastic.
They are:
"Stepmonster: A New Look at Why Real Stepmothers Think, Feel, and Act the Way We Do" by Wednesday Martin
and
"A Career Girl's Guide to Becoming a Stepmom: Expert Advice from Other Stepmoms on How to Juggle Your Job, Your Marriage, and Your New Stepkids" by Jacquelyn B. Fletcher
I only paid about $50 Australian for them both from Amazon. There are some things that are really great about the GFC and that's the improvement in the Aussie dollar
I found out about disengaging from this online forum and I think it is the absolute best advice I have ever received about step-parenting. I found out from this website:
http://www.steptogether.org/disengaging.html
There are some other great essays about the different challenges of step-parenting on the website, it's worth having a look around. I guess what it did was give me permission to release the sense of responsibility for my sson's behaviour which I really have nothing to do with. It has decreased the stress and improved his behaviour at the same time. Sweet!
I hope that gives you some good stuff to look at Julie. I have found it very helpful.
Hugs to you too,
Jodi.
Hi Lisa,
I can't imagine how adjusting to this new phase of your life must be. I'm recently diagnosed (but had my first episode a number of years ago).
Like one of the girls said, the MS Society in Blackburn have an employment services agency that can assist you with your next move, if you felt that you wanted to get back out into the workforce down the track when the symptoms you are experiencing stabilise. They can possibly even assist with finding a course for you to do, if you wanted to do something different; not sure how funding for these courses work, but I think there is some funding available, which is nice to know.
It would be nice if there was an agency that employed people at home who did have a disability, I think it would create a better life/balance for people that want to earn that bit of extra income; I understand the disability pension not to be that great.
I have every faith that you will be okay. Enjoy your friends and family, and down the track if you're finding you want to do a bit more, hopefully there will be something that comes up. If you believe enough in something, it will miraculously manifest itself and be available to you.
Look after you for now.
Good luck on this journey; enjoy the time you have for yourself.
Michelle
Jodi,
Thanks for the response. I have been a member for quite a few years but just don’t post a lot – maybe I have nothing much to say although I am somewhat of a loud mouth in life. Oh well who knows.
Your post read to me like you truly are still in love with your partner. Hence my comment, eventually the kids move on! I know it seems like an eternity and perhaps all too hard especially when there is friction, but they do grow up, become busy and more self focused and move on. THANKFULLY!
Re parenting with MS and fatigue – gee I wish I could offer some real tangible help there, I am no expert just a long term step mum with MS too. Here's how I try to work, but am not always successful due to a myriad of reasons.
Anyway here goes.
Try to be organised – and plan ahead as if you’re expecting a relapse to occur in the next week. (Hope that makes sense).
Get at least 8 hours sleep a night.
Try and eat decent food.
Make time for yourself
Make together time for you and your partner.
Do what is important to you FIRST not what other people expect or want and then prioritise after that.
Try and find common ground between you and your stepson. I don’t know how old he is but I'm guessing around 12. So maybe throw out the challenge to him on some of his Nintendo, DSI or Wii games he's into, and play them with him (time permitting).
Don't be afraid to (as we say in my family) PLAY the MS card occasionally!
As I said previously its hard Jodi, but if you love this bloke then try and work it out.
Oh btw I was diagnosed in 03 with RRMS and this year have been upgraded to SPMS) so I am no stranger to MS and its associated difficulties.
PM me anytime only too happy to help if I possibly can.
Regards
Jardie.
Hi Kim,
Yes, I have and have lost some sight in one eye from a bad attack. Have had a few over the years but haven't lost any further sight, and the attacks have been very mild compared to the bad one I had.
If your MRI lit up like a xmas tree it would indicate inflammation is still present. My MRIs used to constantly show inflammation but since combining acupuncture, fish oil, flaxseed oil they inflammation settled. I now add Vit D into the mix.
I take the high strength fish oil at 5ml daily, and 6gram of Flaxseed. I find the acupuncture is fantastic for dealing with annoying symptoms and making life more bearable. Scalp acupuncture is great for the eyesight too! as well as for motor skills. We're hearing a lot about Vit D at present and I truly believe we will be hearing a lot about acupuncture and its uses with pain management etc; in the not too distant future.
Great that you're looking at the Vit D as you can't go wrong. To me it's going to be all about what difference I notice over time, as in will I have my usually relapses around the same time each year, and whether or not they will be as severe. So only time will tell and I'm hoping it's going to be a positive.
I have noticed some people are claiming to have noticed a difference with their immune system side, as in not getting a cold this winter. Sadly this has not happened to me and I'm finding this winter has been worse than any others with picking up bugs. My levels are fairly high now but once again time will tell this time next year if I keep the dosage up high.
Yes, fatigue would be hard to tell with racing after a little one...That's one thing I'm thankful for is that my son is older. I know I couldn't look after a young child in my situation as my fatigue just wouldn't allow it.
Yes, I understand exactly what you mean about the rebif, as in the awful side effects may be masking how you are truly feeling and doing.
Yes, Yes, yes - I, too, am a step-parent.
After ten years experience, and as a sufferer of MS, I say think of yourself first. The partner and I now have a child together, and I must remain strong for him.
The reality for me, now, is that it is survival of the fittest. I know this probably sounds very harsh to many of you.
The step-son is from a different socio-economic background, his mother is the daughter of a serial criminal. From what I can see, there has been nothing this woman wouldn't do to her son, to get back at his father. I could go on but I won't bore you with the details. I could complain about this woman's inhererent brutality towards all concerned. Suffice to say, it's been a real struggle.
Everyone has their opinions about step-parents, and I've come to think that unless you are a total doormat to the child or ex - you are a bi*ch.
I wished I'd known about a support group for step-parents on-line can you please post the link?
I'd be happy to chat to you more about this if you'd like.
It is stressful for anyone..much worse for people with MS.
Lots of hugs from me.
Julie
A few years back the daughter of a friend of mine, had for her 3rd birthday got a goldfish.
A couple of days later i came over and the goldfish was gone. so i asked what had happened. Alexi (the 3yr old ) told me that she had feed her goldfish "Dora" a peanut butter sandwich the other day and that later that day Dora had died..
a bit worried i asked if she had learn anything from this experience, and Alexi looks at me with the biggest blue eyes and says: i don't think Dora likes peanut butter!!!"
Hi Karen,
In total i was off my betaferon (drug at time) for a year, so yes it was out of my system for a good while.
Listening to what you say about your relapses sounds very similar to myself. I really do think that i am getting better, i am starting to think the Rebif "may" be helping but i think sometimes the side effects of the Rebif can mask how im feeling as a whole. Does that make sense???
My fatigue seems to be the same i think, i cannot really guage it as having a young one makes any healthy person tired at the best of times
I have had an MRI since birth, had it on the first relapse which was three months after birth, the Neuro said it was considerably worser than the last one and lit up like a christmas tree. But saying that i hadnt had an MRI in years. Not my favourite things to have. But having another one in sept this year to see where im at. Also in the coming weeks im having a checkboard test for my eyes, to see the extent of damage from the Optic Nueritis. Have you had Optic Neuritis??
Anyway hoping to go on that Vitamin D asap, done alot of reading since being on here, sounds like the way to go
Kim
Mea culpa, Boss. I will try not to do it again.
Helen.
Hi Bec,
That is so funny,and may I say your niece sounds like she's certainly a smart young girl. I bet you could have knocked your sister over with a feather when she said it.
Karen
Helen I think your "CAPS LOCK" automatically activates for titles could you get that checked out please lol, but seriously please don't shout!
http://community.ozms.org/content/netiquette
1. All Caps
All Caps are not acceptable on OzMS it is considered to be shouting and definitely not good netiquette, it is perceived to be quite rude! Emphasising the very occasional word by putting it in caps is fine but only the occasional word! This applies to all text on OzMS. If you do not abide by this, you will get one warning, if there are anymore posts with all caps, the post will be deleted, it may be the only way to educate people. Work with us not against us and everybody will be happy.
It's absolute gold isn't it? Sometimes my sson comes out with the funniest things like that and I have to laugh. It's just so funny. It's times like that when I don't mind being an instant mum.
Cheers,
Jodi.
Great question. Well I have not left the group because I have many identities and one of those is a step-mother and I need advice about it. It's probably the hardest job I've ever had. Knowing that you are not alone is important and like here, sometimes you can gain pearls of wisdom that you can try in your own life to help yourself.
When it really comes down to it, these women have something in common with me. They are instant step-mums. And the online medium can be quite ineffective in expressing how a person really feels and can be misinterpreted. In this way, the online written word, whilst often therapeutic, can be a very ineffective medium for communication. It is not as rich in meaning and context as the voice or the body language.
In the end I asked for a reply and got one. And the non-reply was not about me. This doesn't surprise me. So it's ok. But I'm still glad to meet others who have MS and happen to be step-parents as well.
Cheers,
Jodi.
I haven't seen your name on this site before. Funny the people that come out of the woodwork when you ask a question such as this.
Actually I have done a heap of research on this as you are forced to as a step-parent. I don't have kids of my own and never intended to have any. This is reinforced now that I have MS and suffer from the fatigue. Work is enough for me.
Things have improved over time as I lived with my partner for about four years. We had all sorts of problems as my partner is a big softie and as far as I'm concerned way too soft with his son. Because he does not command respect from him, he has accepted behaviour I personally find appalling. He is an attention seeker and energetic boy. This takes a load of energy from both of us. And this is a problem with the fatigue. You may be familiar with this problem. Because of this, I have had to disengage a lot to preserve my health.
I had a fairly normal upbringing in a middle class nucleur family but my partner never knew his father and had an abusive mother so he has never had a proper role model for parenting. He now asks my father a lot for advice on various things so I guess my father is like the father that he never had.
Interestingly just tonight we watched this program called "The world's strictest parents" and it's great because my partner gets lots of ideas on how to get good behaviour from difficult kids. He is learning that persistence and being quietly tough is the key.
The ex is a real crazy woman and my partner and I have very strong opinions about her, but we don't ever reveal any of that to my sson. For the first year that I was with my partner though, that was not the case, and my partner and his ex openly fought in front of my sson. Very damaging and I stamped hard on my partner about this. My partner was creating a big problem for himself and our relationship. Fortunately he is a lot more careful about this now. We also had to have a united talk with his ex as she was trashing my partner with my sson. I am not sure whether that happens now, but I choose not to talk to her and to let my partner sort out his stuff with her. We spend as little time with her as possible.
I could have just walked away and believe me I considered it many times. But I do love my partner very much and I can't really see myself with anybody else. It's just the way it is.
Thanks for replying and I hope that you will reply with some ideas about the fatigue and parenting.
Cheers,
Jodi.
Hi Kell,
Definately report the gp if he will not do what the neuro has said.
Phone neuro & get him to fax the script to your local pharmacy if that is easiest for you. I have done this before & any Dr/specialist can do this too from what I know.
Definately bad to come off suddenly, like most drugs need to be off it slowly.
As for pain clinic the wait is usally very long for sure. I have been on the wait list for several months & will still be a way off from what I gather.
Take care of yourself
Hugs, Sue