Support for those with invisible Illnesses

http://www.YouTube.com/watch?v=ZqAF8xHRiSA

This spoke to me and thought i’d share this with you…*hugs

Submission by dtastes

Thanks so much for sharing this, I think we all feel like this sometimes, whatever situation we’re in.

(Trigger warning for self-harm)

I was at my Dad’s for new year and I didn’t have much internet access. The weekend went reasonably well; I got terrible pains on Saturday and came close to fainting a few times, but for the most part I was happy, up and about.

Happy New Year all, I hope your illness doesn’t treat you too badly. 

ninabunni:

I too suffer from fibromyalgia. I was diagnosed back in March 2010. I’m not going to get into detail right now. But I just wanted to let you guys know that even I don’t know you. I understand your pain and suffering. And I’m here for you for advice, support, or anything! I know what its like to be alone and having no one understand you. Please feel free to inbox me or ask me anything. I am more than happy to help you and be your new friend :). We can work though this together. It may be tough but it is not impossible :). Have faith. I love you, sweetie bears! XOXO

Love, NinaBunni

I lived with two really nice young women for a little bit at the start of this year, and became quite close to them.

This was shortly before I was diagnosed.

I remember when I was there, I used to sit outside of one of their room’s and listen to her play music. It was so lovely to be able to do that; and it calmed me down a lot.

I recently found out that she wrote a song for me when she found out that I had a Chronic Illness.

I’ve decided to share it with you, in the hope that it can bring you some comfort.

This is her myspace: http://uk.myspace.com/emmarushton08 (The song is ‘rize’)

chronically-something:

Wine May Help Ease Multiple Sclerosis Symptoms

In the Belgian research, to be published in an upcoming issue of the European Journal of Neurology, the team examined potential lifestyle choices that could be associated with MS. They examined 1,431 people with either type of MS and compared their symptoms to habits of consumption.

The researchers found that relapse MS sufferers who drank wine seemed to enjoy an observable “protective effect.” Symptoms decreased. In the study, more than 80 percent of the participants drank up to seven glasses of wine per week. The same also held true for people who drink coffee or eat fish regularly. Cigarette smoking, on the other hand, did not help alleviate symptoms in either type of MS.

Lead author Marie D’Hooghe, a neurologist at Belgium’s National Center for Multiple Sclerosis, said more research is needed to explain the results. “Because we have no longitudinal data on changes of consumption over time, these associations could indicate either causality or reverse causality,” D’Hooghe told Wine Spectator. “In the latter case, this could mean that persons who have less progression of disability feel more comfortable to drink alcohol, including wine. This could also explain the association with coffee.”

As for possible cause, the study does offer one suggestion—resveratrol, a compound found abundantly in red wine, is known to exhibit anti-inflammatory effects. “In experimental models, [resveratrol] has been shown to protect against various neurological disorders,” the study text states. Alcohol is also known to reduce inflammation. However, MS is a complicated ailment and the authors warn sufferers not to start drinking wine as a result of their research.

 This is the best research based article I’ve read related to MS ever. I think its wine every night from here on out! hahaha 

 

heathersday:

Fibromyalgia Symptoms could be studies on the net very easily. There are numerous websites leading you how to catch this condition in an early stage. The particular signs and symptoms of this disease a large number of that it’s sometimes difficult for medical professionals to the idea early. Chances are you’ll come to feel low energy plus weariness at all times. Sleep disorders are very prevalent on this disorder. You might think that your eye 8-10 is very 1 week and you may see points extremely hazy. Skin complaints as well as chest area microbial infection are generally witnessed in sufferers. You’ll experience a great deal of queasiness continuously without having reason. Depressive disorder will be a electronic from the significant manifestation of the sickness can impact a existence of the baby. You will not necessarily feel happy from something and can start out believing bad regarding anyone all over. Should it be someone her monaural circuit will probably be extremely annoyed. As a result your ex whole entire body will have a hard time having junk food diet improvements happening. Panic disorders can also be quite normal.

I’ve had a really productive day for once!

But I haven’t rested enough and now feel terrible.

Hopefully I’ll be better for tomorrow.

chroniccurve:

Rheumatoid Arthritis affects over 300,000 children in the United States alone and over 50 million others with autoimmune arthritis. Yet most people mistake this diseases for an “elderly disease.”

roxymariastar:

I don’t really know how to use tumblr properly lol, but thank you for your advise :) I completely understand where you are coming from too :) and I hope things will better for you :) it puts my mind at rest knowing I can talk to other people about this syndrome. Can side affects start straight away from the steroids after only 2 days of high dosage? 

That’s fine C:

The side effects do start quite quickly, I’m afraid, I can’t remember exactly when. But they do affect some people more than others, so you could be lucky.

But yeah, if you ever want to talk to me about your illness, feel free to drop me an ask!

roxymariastar:

I was recently, well 3 weeks ago diagnosed with nephrotic syndrome. I have had a kidney biopsy and I’m awaiting results, I have only started my treatment today including 60mg of steroids. My consultant is hoping and is about 70% certain that it may be minimal change, but I kinda doubt that because of my age as I am 20 years old. I’m just really scared of the side effects of my medication.

Hey there!

I was diagnosed with Nephrotic syndrome back in March, so I can completely sympathise with you. If it’s minimal change, then that’s awesome, but if not then again, we’re in the same boat and I totally feel for you.

The steroids can be pretty horrible, they probably won’t make you feel sick or anything, but they will make your face bloat and your skin kind of blotchy. But as you start taking lower doses (which you most likely will if you don’t have minimal change), it’ll improve a lot. It can also affect your emotions; it makes some people hyper and others melancholic.

I really hope that the biopsy results show that you’ve got minimal change, but if not, then I wish you the best of luck with coping with MN or FSGS.

Managed to actually see some friends yesterday, which was lovely; being stuck in the house by myself all the time sucks.

But as usual, doing absolutely anything has made me feel terrible, and to top it all of I’ve got a really bad cold too.

Fingers crossed I’ll be all right on Christmas day though!

Anyone got any submissions? :)

~Charlotte

xx

And the ignorant opinion of the week goes to…

acrohnieslife:

The pre-diseased me.

That’s good!

I’m sure you’re pretty sick of incompetent doctors by now :I

Hey everyone!

I’ve got quite a few things in the queue but I’d really appreciate submissions if any of you have anything :)

Remember, it can be anything as long as it’s related to invisible illness.

I walked up and down my road today and got so exhausted I had to sleep for an hour.

My road isn’t even very big.

It’s a good thing I’m not into sport really, it’s practically impossible to exert any energy with my illness.

How’s everyone else doing?