As some of you will know I am chronically ill, have been for nearly eight years now. I have something called M.E., also known as CFS. It is a very dibilitating illness and has prevented me from continuing with my studies or going on to work. My symptoms are extreme fatigue, nausea, stomach pains, legs and shoulders pain, insomnia, and poor cognitive behaviour. These vary every day, but are there always. So I am terribly excited as I am about to start new treatment!
I have tried many, many things to get better. Acupuncture, Hypnosis, conventional medicines, and Homeopathy to mention just a few! All of which I was, and still am, skeptical about. But I am about to start new treatment which is completely different. It is brand new technology, and rather contriversial, and highly demanding. This Doctor has been treating a few friends of mine, all with incredible results. It is going to be very hard going I think, but if it works like I think it may it'll all be worth it.
Here's what I have to do...
1) Go to bed at 10:30pm and rise at 7:30am.
2) Take 12 different types of suppliments (including Magnesium and vitamin B12 injected!) daily, at lots of different times. Some six times a day!
3) Take Far Infra Red saunas daily. Immediately shower afterwards.
4) Diet elimination. So no dairy, soy, wheat, rye, sugar, or anything processed. No tea, coffee, and a load of other random foods. I'm also a Vegetarian!
5) Rest a LOT. I'm not supposed to be up for longer than 40 minutes at a time. If I do an activity (ie: have a shower) I have to rest for the equivalent time it takes to do that activity. Everything is an activity (I knew this one already!), even watching TV, talking to James, reading. Everything!
6) No jewellery. As I have a high level of nickel in my body. I'm still wearing earrings and my tongue bar. I dont want them to close over!
7) No chemicals. This includes things like perfume, make up, cleaning substances, and nail enamel/remover.
It is going to be, already is as I am doing the resting, no jewellery (apart from my earrings and tongue bar!), no make up, no nail enamel bit already, very hard. I started on the first suppliment last night. It is called Glutothione and I have to take it twice a day before eating.
I will let you all know how it is going in the next few months. I have no doubt I will post some 'I hate this!' posts at some point too! I am very excited at the same time though as I have never felt before that the treatment I am about to take part in could make me better. So please, keep your fingers crossed for me as I think I will need all the help I can get!
Wow Jess, that does sound rough, but I know you can do it! I pray the treatment gives you great results. Stick with it and give it you all and let us know how things progress.
Jess, you have been on my mind this past week and kept meaning to PM you about that. WOW, that is really alot to think about and do Jess. Did the doctor happen to say when you might start seeing results and or improvements???
I really hope and pray that it does help Jess, you are such a young and kind person and I have a hard time thinking that you have to go through this every day of your life.
Also, have you heard anything about your benefits that you applied for? I know you had a tribunal that you went to a while back.
Keep us posted about this, and if you need to vent, cry, or just talk, you know where to find me!!!!
Jess Im so sorry for all the things you have to go through....However I know you are a strong tough chicky! And you will have ellie by your side the whole time to help you get better! Relax as much as possible and keeep a positive attitude and you will be fine! And if you ever need to vent or complain please PM me and just release it all!! I dont mind!
Thank you all for your kind words of encouragement and the offers of help, they really mean a lot to me.
Sattie, unfortunately there is no way of knowing how long it'll take for my body to start to repair, it's completely different for every individual. I know I will be on the diet elimination for about six weeks at the end of which I start to reintroduce foods back into my diet. So the diet will take about eight weeks altogether I expect. Having said all that, I'd imagine no more than eighteen months. I really dont know. As for the benefit, well my tribunal in july was ajourned for six eight due to new evidence (in my favour). I had my second one a week ago and that also got ajourned. The problem is M.E. just isn't known or believed in enough for it to be easy to win my tribunal over. Basically it's a prejudice. Had I have something they could see or a well known illness the situation would be completely different, but because M.E. is so contriversial they make me jump through an awful lot of hoops. It's probably best not to get me started on this one as it makes me extremely angry, and that would just bore the pants off you!
Brittany, thank you so, so much for the invite, I may well take you up on your offer at some point! You're right, Ellie certainly helps me if only because she makes me smile and laugh. She also gives and allows me to give so much love; I cant imagine how I lived without her by my side before! Love ya too sweetie!
Jess, you are certainly in my thoughts and prayers, sweetie! Your condition also meets with the same difficulties in treatment and being taken seriously over here in the US. My neighbor has CFS and has gone through a terrible time getting disability benefits.
Surround yourself with love, hope and faith, dear, and those things will give you the inner strength to continue the fight.
And as others have said, if you need to bitch and moan, this is the place! We can take it and will still love you - just like our chis do!
Jess, I didn't know about your illness and am sorry to hear what you go through daily. I will keep everything crossed and prayers for you that this new treatment works.
I will keep my fingers crossed for you, but I am sure you will do great! You are such a sweet and strong person and I am sure everything will work itself out
Thanks for filling us in Jess, as for the tribunal... I can certainly understand the frustration. I will keep praying that a way will be made so that you will have the benefits you need. (Just so you know, I have never found any of this boring!!)
Like I said before, keep us posted dear, you got alot ahead of you and I know everyone on this forum is here for you!!!!
I will be praying for you to have strength and that the treatment works. Know that you can always come on here and vent PM me if you want to curse or type in caps :) If there is anything i can do to help just let me know. In the meantime keep us updated and know i will be thinking and praying for you every day.
I will keep you in my thoughts and prayers that you will have great outcomes with your new treatment Jess. It sounds like alot to do, but if it helps, then it all be worth it for sure.
Wow, I cant quite believe how supported and cared for I feel from you guys. It's quite amazing. Thank you all.
I have started on one of the suppliments, called Glutothione. It is in a capsule form so is easy to take with water. I take this one twice a day, 7am and 7:45pm. No side effects so far! Yippee!!!
I am also resting a LOT, but I find it very difficult as I am the sort of person who as soon as I lie down I pick up a book, but I'm not supposed to! It's very tempting, but I think I just have to be stern with myself on this one!
I start the diet on sunday as it's the 1st so a good date I think.
Crossing fingers, toes and eyes for you girl. Also praying the new treatment will be just what the doctor ordered and you will be on the road to recovery.....Linda
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