Hi Free, thanks for your thoughts. I am not really well enough to call it a remmission yet. I did have a remmission for nearly 10 years at one point where i was more or less o.k and could lead a relatively normal life (although not normal if you where a sports fanatic or wanted to work full time and bring up a family)
Now i have been at about a 25 - 35% on the Bell scale for the past couple of years, but am now approx 40-45% so feels like a big improvement to me, but nowhere near better. Sometimes i feel almost normal for a few hours at a time if i am sedentary. I have been able to walk a bit further and have enjoyed a few gentle strolls over christmas. Also the anxiety/panic feelings have reduced a lot which means i have started to go out a bit more and feel a bit more confidant.
I understand the sleep thing - now my sleep is a bit better i actually wake up feeling worse. Like i have a hideous hangover and have been up all night drinking. The truth is i may have stayed up till 11pm and had an extra cup of herbal tea! This has been happening a lot recently, waking up aching all over and cant see properly and feeling sicky etc, horrible - although it wears off as the day goes on.
The brain thing i am trying to describe is very strange and frustratingly hard to describe. It is very much like going vacant and then i think UH OH here comes the weird feeling (a bit like when you know you are going to get palpitations) Then i feel a werid feeling in my brain, then its all over, and i come back to feeling normalish again.
I tend to agree now that remmission is not a cure. When i had my long remmission i thought i was completely cured forever, but now i really think it can always come back again. I also realise that i thought i was completely well but i wasnt really, i was like someone with very mild M.E. I could do most things others could, but always felt more "sensitive" or "delicate" i could never walk as far as others or drink as much alcohol or go without sleep. Another problem i had was that when i excercised with say running or swimming i would often get that feeling like im going to die feeling. And no matter how hard i tried, i could not get fit like others could , so i doggedly carried on pushing and pushing to be like everyone else until i ended up very ill again.
I also believe it is immune/biologicaly based. I have had Mitochondrial testing that showed up quite a lot of abnormalities. Try telling that to my GP who keeps insisting that there is nothing wrong with my immune system. He has twice recently used the words "its not as if you are immunecompromised like a Diabetic or cancer patient" He then refused me antivirals for suspected swine flu, even though i also have asthma and a fibrotic band in my lung and have had Pneumonia and pleurisy in the past couple of years and have been treated with high doses of steroids for my lungs. It makes me so angry!!! I better stop thinking about that now or it will ruin ,my day. And then after youve been treated like this for years on end they wonder why you seem emotionally fragile and cry in the surgery(with frustration) and then they get the antidepressants out!
Rant over.
Thank you for discussing this Justy, if i had any ideas on what to say to help you i would in a instant, it seems for the most part all i can do is act detective to compare our illness to see if patterns show, which might help us all in some way i havent yet figured how.
Your symptoms to me, sound like what it was like for me, prior to a very slow remission starting, KEEP GOING JUSTY your improvements sound familiar to me
i can identify with so much that you say that it verges on scary, and quite frankly amazing in the similair nature of some of our symptoms, what you have said here, has got me again. I dont always remember to point out certain problems, many subtle ones that i would rant for far too long. but im convinced its a important way of understanding whats really happening to us, and i think i know, you know thats what im really trying to do, Others i feel just think im selfishly ranting, and i agree it often feels like that TO MYSELF but my intention is to learn with people who ever is interested in learning this way.
Ok the aching eyes, yep i forget to mention that, its become a big symptom, i often notice it more first thing after waking, if i rub my eyes i can feel the pain when i push. I also get headachs a lot, sometimes shooting pains that happen quite frequently. lately justy ( maybe the last year ) the back of my kneck is now starting with a really quite severe ach, feels like somekind of disease progression, I also often wake up aching all over, more my legs, both the muscle and joints, when the ME symptoms are worse so is the aching, i suspect your thinking yep ? something else is happening i cant lift my right leg very high when getting dressed, as i have a joint ( its not a muscle ) Pain. Now my arm joint is doing it, so when i lift my right arm i can feel a achy pain in the joint, due to movement. Strangly Justy this is just on my right side, as the joints in my left side seem to not be affected ( YET ) Noy sure if this is ringing bells with you ? Also my vision is failing, everything is getting very blury close up. Not so bad at distance but close up forget it. I have glasses for that which helps, but it feels like it is progressing, A eye pressure test i had, was right on the upper limit, and i was told to come back in a year to check it again, as normally a 2 year check was fine ( i havent though as i moved )
your qoute here just rings true to me AGAIN lol
I tend to agree now that remmission is not a cure. When i had my long remmission i thought i was completely cured forever, but now i really think it can always come back again. I also realise that i thought i was completely well but i wasnt really, i was like someone with very mild M.E. I could do most things others could, but always felt more "sensitive" or "delicate" i could never walk as far as others or drink as much alcohol or go without sleep. Another problem i had was that when i excercised with say running or swimming i would often get that feeling like im going to die feeling. And no matter how hard i tried, i could not get fit like others could , so i doggedly carried on pushing and pushing to be like everyone else until i ended up very ill again.
End of qoute.
I cant belive your GP acts like that when will this ever change, it is a crime. So did you actually have swine flu ? its rising now isnt it, and im a basket case, locking my self indoors, avoiding coughs from family members, my usual winter parenoid scared behavioir. If i get swine flu i feel i will die, pretty scared of that presently. Why the hell didnt you get Tamiflu? your doctor sounds really poor, And as for crying Justy, yes i did that too, and they ( GPs ) really dont get it,at all do they, they see it as evidence your depressed, HELLO YES IM DPRESSED ALRIGHT, IM ILL. Wouldnt they be depressed, stupid doctor. Swine flu nearly just killed my healthy and fit, with no underlying conditions Nephew he was in intensive care, with hes lungs failing. im also terrorfied for my family, my 12 year old daughter has to travel on buses, and is going back to school soon. Experts are saying when that happens more kids will get it. Just plain scared. how do others cope is beyond me.
Anyway. dont feel like you have to reply Justy if your energy is low, i fully understand. But sounds like your doing a little better lately,its so great to hear you say that, keep pushing ahead
