Currer: Please Read

[Navid]

Hi Currer:

you have mentioned in a couple of posts that your health has improved markedly. 1st of all congratulations.

2ndly can you share with me (pm or email if u ike) any things you have done that have contributed to the improvement.

my health unfortunately has take n a dive and i ma looking for ways to get some improvement.

thanks for any and all help you can provide.

warmest regards

 

[currer]

Hi Navid,
How strange to see my name up on the thread titles!
I am really sorry to hear that you are having a rough time at the moment, I do hope you can improve. I know how desperate it can make you feel.

I dont really have any quick solution to this problem. I wish I had. I can only tell you what my general experience was.

I became ill when I was twenty-five, and I am a lot older now.
After struggling with my illness, job, life etc for six years, (and exercising to boot when able as I knew no better- swimming, cycling, walking,) I had a massive relapse and ended up in bed for two years, unable to talk, think or read, or get to the bathroom.
I kept away from doctors, as I realised by then that they could not help, and could even do me harm, and rested completely. I was completely housebound,(roombound actually) for another three years - thats five years in total, before I could even go out occasionally.
I was incapable of doing anything other than rest anyway. I tried to accept my incapacity and not run away from it. Running away (psychologically, of course) made it much worse and more unbearable.

I have improved gradually without medical intervention and relied on my body to naturally repair itself, which it has managed to do. I think that you need to fiercely protect the health you have when you are in a relapse and not push the boundaries until you are well into recovery. (And that can include experimenting with new treatments)
Nowadays I can live a pretty normal life, I can even dig the vegetable patch up - although I am not able to take the stress of working full time. I am only partially recovered, really, but I feel well and happy most of the time and I suppose have adapted well to living with a chronic illness.
I have had relationships since being ill, and did not find that the illness was a particular problem for me in making a successful relationship. A good relationship can compensate for life not working in other areas though you have to be honest about your illness and find someone who is prepared to live with an ill person.(yes, they do exist).

I am sorry if you were hoping for more answers. I see myself as recovered, mostly, but I am aware that my assessment of "well" has shifted due to the illness. I live in England, and good (not psychological) treatment here is largely supportive and aimed at easing troublesome symptoms while allowing the body to recover naturally. Experimental interventions are frowned upon. Since coming to this forum I can see that in America a large number of treatments are used which are not available in England. I do worry that Americans are making themselves ill from all the drugs they swallow. In England treatment is much more conservative, but the overall outcome seems much the same in both countries.
I do not use any drugs for the CFS/ME, just painkillers sometimes.

I dont know where you live, but I would encourage you to get in touch with your local CFS/ME organisation, as they will have information sheets on the basic drugs that are used to deal with troublesome symptoms. If you can control these, hopefully, you can start to improve.

All my experience with my local group was that people varied immensely and one treatment, for example, that helped one person for sleep or pain, could make another ill. There was no way to predict what would happen and so anyone trying a new drug had to bear the risk themselves. This was particularly dangerous if the person was already weak and at a low ebb as they did not possess the resilience to bounce back from a bad reaction to a drug. For this reason I cannot advise you on treatments, but I want to encourage you to believe that you can get better, even without treatment, as the body always strives to heal itself.

I got a lot of psychological benefit from meeting other sufferers in my local group. They offered a support and natural understanding that was impossible to get anywhere else and became good friends.
I do seem to have improved psychologically after looking at my diet and digestive problems, though I am not sure why. It could be that I had some food sensitivities.

I am sorry I cannot be more specific. I think it is worth following your intuition but do not spend more on any treatment than you can afford to lose financially. Dont go for the outlandish "treatments" however promoted. If there were a cure for CFS/ME we would all know about it already. I have spent very little on treatments and yet have eventually stabilised.

It is worth remembering too that this forum probably attracts those sufferers who have not recovered, while those who have recovered, completely or partially, are getting on with other things and do not come here. I kept away from CFS/ME for the last five years, and it was only the WPI's discovery and all the excitement of XMRV that has made me re-involve myself. So anyone coming here would be likely to think that their chances of recovery are lower than perhaps they actually are, because most people here are still badly affected.
My experience of a large number of people with CFS/ME was that over a number of years, most people eventually stabilised into some sort of tolerable life. Of course, some people, sadly, do remain ill.

I am so sorry that you have to go through this horrible experience.
I hope the work the WPI is doing will change all our futures for the better.

 

[Navid]

thanks currer...did you feel like a movie-star having your name in the marquee : )

your advice is very good and very timely for me. i have been running around for 7 years trying to find a treatment. recently i tried arv's and have sunk to a new very low level...before that i could still drive my son to activities and go to his sporting events. since trying the arv's i have lost that functioning.

i think your advice is good for me to read over and over again.....to be gentle with my mind and body and hope/pray that it will find a level of wellness again.....hopefully someday someone will find the real answer to what is going on but in the meantime all the experimentation has been my worst enemy.

i am glad you are feeling so much better and i thank you for sharing your views with me. i do truly appreciate it.


warmest regards

 

[pamb]

Thank you Currer, for sharing a very uplifting and personal story. You have done a great service today.
And thank you Navid, for asking.

 

[liquid sky]

curer, I appreciate your summary of how you improved. I go back and forth mentally constantly, trying to decide whether to push harder or let up. I am afraid if I just rest all the time, I will lose what function I have left. On the other side, each time I push, I crash a little harder.

I am a nurse by profession and I was always taught that with a chronic disease, you have to use it or lose it, when it comes to functioning. It is really hard for me to put that aside.

Your body took that choice away from you and it sounds like you allowed yourself to learn from the experience. Five years in bed? So sorry for your suffering. I am mostly housebound, but I do get out once in a while. I still force myself to exercise(walking only). Mostly, I don't want to disappoint my family, so I push ahead.

My body says just rest. It screams out every day, but my mind won't accept it. Your post is one I will remember. I am glad you have come to a healthier life and thank you for sharing your story.

 

[currer]

Thankyou everyone for your kind responses. I am glad you found my post helpful as I was unsure how much was good to reveal to others.
From what you have said here, both Navid and liquid sky have families, and I can tell that it is especially difficult for you both to be "selfish" and rest as much as you need.
Our CFS support group started a group for members who were parents as we realised there was lots of support for disabled children, but none for disabled parents of healthy children, and these parents were really suffering from guilt because of their limitations, and were unable to rest properly as they forced themselves to carry on. These parents really needed the extra support they got from each other.
It can be really helpful to contact other people in the same situation as yourselves. I hope you will be able to find a CFS group locally, as the internet is not enough.
Although the national CFS/ME patient organisations are often criticised here, they do have a wealth of experience from their members to draw on, or could perhaps put you in touch with others in a similar situation. If you are not in contact with them already, do get into contact with them now.

Liquid sky, I think you know you are doing too much.
I made myself really ill by forcing myself to exercise. You need to conserve the health you have and find a safe baseline. From there you can build gradually and safely. Dont make yourself worse by pushing on, but try to listen to your body.
Becoming emotionally unstable and depressed can be a sign that you have overtaxed yourself.
My consultant used to spend a long time with his patients persuading them to allow themselves to do less.
All my experience tells me that forcing activity during a setback or relapse is the worst thing you can do. People can sometimes get away with it for several months and then find they relapse at a later stage.

Navid, thanks for your reply. I am so sorry to learn how ill you have become. I hope you can improve with time and rest.

You have tried to get well for your son, you took quite a risk for him, you need to give yourself permission to rest now. Your son will know you love him even if you cannot go to his sports events. That is the most important thing. I knew many people who were quite ill with ME in our group, and their lovableness was not diminished by their illness, in fact it was enhanced and they were still able to express their love and care for others. Illness is a part of reality and your son will not be harmed by understanding that you are ill. Many children have sick parents but they can grow into more caring and responsible adults as a result of their early experiences.
I hope you will be well enough to post on this forum sometimes. I will look out for you.
Best wishes. Currer.