Only bad days or worse days....

Hi Sadly,

I think we all have our own experience of this condition and share some similarities between us all but not exact copies of symptoms. At present, i too feel pretty ill, yesterday i did too much and now i pay but, i felt pretty ill most of last week too. I glide through life more a shadow than the entity i was but, feel i have pleasurable time still amid the pain, brain fog and inability. I have severe issues walking, made worse this last year. For this i have started to attend physio and am experiencing less back issues which is great. My walking is still affected though. Through inactivity i have put on weight so, i am eating a salad a day with chai seeds, omega seeds, avocado and beetroot. I am taking a suppliment called feroglobin which claims to help tiredness and fatigue as well as calcium and magnesium as well as a dairy free yoghurt drink. Funnily, i have started to be able to tolerate some music easier since starting all this. Today is a rest day. The headache and eyestrain, neuralgia and red hot ear stop me from doing anything much. I have come to terms with that and although i can look around and know what i "should" be doing, it would be not only a waste of any energy i have but would further deplete me. On the plus? Last year was worse for me. More pain, more exhausted, more feeling at a loss. Don't get me wrong, still have these symptoms but i feel kinder to myself about them and rest and will eventually get into a better routine.

I have a cleaner that helps, children i can ask for help and am resting when i can. I cannot do shopping or carry things without pain and if i try, like yesterday, to alter my path a little, bang! Too much leads to the next day having to do very little.

I have other circumstances that take my attention that at present add to my inability to rest more. My daughter struggles at school and is waiting a diagnosis for aspergers. She has to be accompanied to school and picked up sometimes at short notice. Next year is year 11 and I'm hoping things settle a bit after that so i can get my routine more organised. At present i'm coasting but am ok with that. I don't want to push myself too hard right now.

It sounds like you feel you have exhausted everything but, people do recover spontaneously from this without doing anything presumably! My friends partner had it for 10 years and is clear now with his own personal fitness business.

So, yes, like you no major good days right now more less bad days and less really bad days though. Don't give up hope.

Beverley

Yes! Mine started with a flu shot, im sure. So im guessing mine is a chronic virus(ebv) becuz i feel the same every second ! 28 years! Im shocked i haven't got throat cancer yet from the chronic sore throat.. or any cancer from my poor body dealing with this for so long! That is why i try to do everything as healthy as possible.. soaps , shampoos, make up, all natural. Foods as many veggies as possible-kinda bad there but try. Cut down on sugar, wheat and dairy. Even cut down on microwave use. No corn syrup or msg in ingredients. Just trying to preserve my body as much as possible. Sleep 8 or more hours is my #1 help, but rare. Epsom salt bath was my #2 but now im dealing with feminine stuff , menopausal, which makes baths hard. Ugh!!! Vitamins! I decaf drink green tea every morning with coconut oil, little bit wheat grass powder and gojiberry powder. Just bought some maunolaurin for immune system havnt tried it yet. Did yours start with a virus? Have you tried sntivirals? They help some people.

I too find myself at the mercy of the relentless illness. I just feel useless and worthless all the time. I never have good days or periods of wellness. I have yet to even be given a diagnosis, all my doctor will say to me is that I may have CFS/ME. The last time I saw my doctor he even downloaded information for me about the condition but will not commit to diagnosing me even though I have been like this for over two years. The worse thing about this illness is that it is invisible and as such I have often come across people who think there is nothing wrong with me. My days are filled with pain and exhaustion and,for me anyway, there seems to be no end in sight.

I can totally relate. I've had ME/CFS for almost 20 years, and haven't felt even halfway normal since I first became ill. By the way, you express my situation so eloquently. What is, I think, especially unusual about my case is that I was diagnosed in about 3 months. Then I went on to see one of the best specialists in the U.S., Dr. Paul Cheney. In spite of this, I kept getting worse. Nothing has helped. To perhaps give you a bit of hope, though, in the last few months, I've been able to get out occasionally. I can go for a meal with my husband, or take a special recliner chair to the movies. Sometimes, these "activities" cause me to crash. I now wear a heart monitor, in the form of a watch band. This helps me to know when I overdo it. Of course, overdoing it can mean just walking from one room to the other. I've found that in such an extreme situation as mine, mindfulness meditation has helped me to cope. Also, I've had to go through a kind of grieving process for the life I once had and the person I once was.  

Hi sadly, so sorry to hear this, regular light stretching , yoga can help , chanting, and a relationship with a loving God and self for support and healing <3 Guava

Hi I never feel better. Over the around 22 years I have had ME I have got worse . never improved. Had shingles for six weeks at the moment which is making me struggle even more. And horrendous pain on top of my usual constant pain. Any infection really drags ME down. And having ME makes it worse and take longer for an infection to subside . can't win ! X