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Name: Belle

“Attached is a little something that you may wish to put on the website.

It is vital to have a good diet to ensure that your body is getting all it needs. Having to much fat or unhealthy foods can make your body feel sluggish and make things worse. Eating healthy might take a bit of getting used to but the benefits are amazing and you will feel so much better for doing so and your immune system will get stronger if you eat well meaning fatigue and illness will become less frequent.

 Exercise:

Although life is tiring, it is vital that exercise become part of the weekly routine. Even if it is half an hour a week it will make a difference.

Swimming is great to get the circulation going and give you boost.

Even to take a walk or a push (if in a wheelchair) to get the body going and the heart pumping.

It will be tiring at first and it is not always easy to get yourself in a routine but again as with eating healthy you will feel the benefits in both body and mind.

If you are given the option of Physio it is vital that you take it. Once a week is perfect you can meet like minded people, get advise on life in general and help. It will help you feel a little less of an alien.

 Keeping a healthy mind is vital you might look to alternative therapies such as Reiki, Meditation, Reflexology. It will help strengthen the mind therefore the body will benefit. Anything is worth a go as long as it is safe and will not cause you harm when doing it. But you have to be opened minded to different things to keep you getting better and to keep you well.  Remember it is much harder to have a down day rather than an up day,”

Muscle spasms
Anybody got any good suggestions for muscle spasms in the lower back, then into my legs.  On Pregabalin 200mg x 2 a day and Clonazepam and Tramadol.  Spasms last 15 mins, I cant move and it’s really painful, any ideas?

A daily struggle
I fought with a pickle jar and it won I fought with a wrapper on my soap and it won I fought with the remote and after several failed attempts of changing the station I just gave up and sat the remote done Oh and this one really annoys me I fought with my bra and it was like a slingshot and smacked me in the face I walk into a store and people point I just look @ them and wave I should just say im not drunk do I need to take a breathlizer The daily struggle of living with this unbearable disease

Worried
Hi all, I’m hear to moan, didn’t feel to well yesterday morning and but midday i was in panic mode, lost all my strength (what strength i have) pins and needles, my left side doesn’t always do what its supposed to but yesterday it had a mind of its own, then the pain, no comment, i gave myself till four and it was ambulance time, three, it started to lift, four, i had the confidence to cancel the the ambulance, now it’s just the fattige i say just the fatigue but you know whats it’s like, so week of rest and start walking and building up again. Thanks for listening to me moan i feel a lot better for that.

Colds
Hello everyone, hope your all doing well? I just wondered does any one have any useful hints/tips or secret remedies to a) get rid of a cold/chest infection considering we aren’t meant to boost our immune system?! and b) get rid of terrible acne caused by steroids? It’s that bad that my make up doesnt even cover it up : ( Thanks xx

Steroids
I have a questions about side effects to steroids. I was given three IV doses of steroids during my last episode of ON. Then, was given 35 days of 60 MG a day of predinose. I’ve been on steroids before and experienced the acne side effect. But, this time it is really bad. I have terrible acne on my back, shoulders, and chest. So bad to the point that my mom was afraid that I have measles. I’m not on the steroids anymore, but I’m just worried, because I’ve never had it this bad before. Should I go to the doctor? Should I even be worried at all?

Blood Donors
Something I have always wondered….. I have donor checked on my licence and I was wondering, CAN I even be a donor?? and can I donate blood??? I always forget to ask and that is one thing I was going to bring up at the conference but I spaced it off…..

Conference Feedback
I am so happy that I attended the session about “How to manage and cope with your symptoms” at the Conference! I am proud to say that I kept up with two back to back days of a one mile power walk and although I had numbing and tingling in both my legs, I took Dr. Van Herle’s advice and just continued on through it and I feel great that I have exercised for 2 days in a row now, and I am committed to continue with it as long as I am able to. Now maybe if I could shed 10 pounds along the way…on to the Nutrition segment, lol!!
 Hi everyone,I promised I would give an update on the highlights from the NMO patient day.I understand that the sessions will be available online at some stage. There was alot of technical stuff that was heavy going for a Wednesday evening after work, but overall it was very positive including the development of an antibody that they hope will prevent attacks.My reflections (this is just my take on what was said)…-Research is changing the course of the disease-They are learning all the time – as are our immune systems-Importance of lifestyle – sleep well, eat well, reduce stress, exercise (as much as you can) take your medication and wash hands regularly!-Nutrition – there was a really interesting session on this, worth watching-It’s all a balancing act (quite literally in my case!)-The body is an amazing and resiliant thing-I am glad I do not have to worry about health insuranceThere is alot of good work going on out there, I was only aware of a small part of it. JR and the Walton Centre are in the thick of it so it was very reassuring.Have a good weekend everyone.

 Access to Work
I did not get the position with  College:( I was told that it is too high of a risk to enroll me in the program due to my disability and that I cannot guarantee that I will not have an attack and not be able to complete the program. 🙁 So not fair. I was honest and upfront about my health and issues and that is what they hold against me, grrrr. She said that the partners were worried about the expenses, if I were to get sick and only be able to complete half the program they would have lost funds… still I don’t think that is very fair to those that have disabilities. grrrrr. It is very dissapointing especially when she told me that otherwise I would have been an excellent candidate. I even offered to have doctors fill out forms verifying whether or not they felt I was able to complete the program ….
 

These stories are personal views and not the views of the National NMO service