Hello all,

I'm newly diagnosed with CVID. Although I'm not continously ill, I suffer from a severe fatigue. I used to be fit and do sports a couple of times a week, but lately I can't bring myself to do anything anymore. My social contacts are in decline, visiting friends after work is nigh impossible, I'm getting moody and depressive. This is a critical phase in my life, I started a new business and our customers are really happy, but I can't work more than 5 days a week, and those I only just manage. When I come home in the evening, all I want is to lie down or chill out, the thought of sex or sports is just too tiring. My relationship is beginning to suffer.

I'm angry. I'm so terribly angry. I feel like I am being cheated out of my life, my perspective, my chances. I need to deal with this anger, its beginning to harm me. What can I do?

Hi there, I read your message and could immediately relate to the way you are feeling at the moment. Please do not give up. I was diagnosed with Job's Syndrome a few years ago and, as it is still so rare, there is no cure for it yet. Like you I also feel so very tired and just doing anything can seem like a huge effort - even getting out of bed in the morning!

At the moment you are still coming to terms with your diagnosis and learning of the impact it is going to have on your life. However, you do not need to give up everything, it is learning to pace yourself and accepting that rest is important for you to do the things you want to do. Ten years ago I was given only a few hours to live as I was so critically ill. During the time I was in hospital I could barely walk around the bed without feeling severe exhaustion. I used to cry and get so angry that my life would never be the same again, I didn't ask to have this illness and why was it me who had it when I wanted to live a full and fulfilling life?

Although it took a long time and admittedly I cannot live all my life as I did previously, I have built a new life for myself with which I am happy and still feel that I am making contributions too.

Don't refuse any help that is offered, always take time to consider whether it would be beneficial and may even help you to do other things.

Acceptance of your limitations will play a big part, but as you move forward you will look back and realise just how much you have achieved. Sometimes I do feel twinges of resentment - I'm only human, and I have to tell myself that things could be a lot worse.

I know that when you are feeling so low and depressed you think you will never be happy again or be able to enjoy life and do the things you enjoy. It will take time but eventually you will start to improve and take an interest in life again. Don't let the anger get the better of you and it will start to subside.

I can only hope that some of this is helpful to you. I have been where you are now and can only say stay positive (not easy I know) and always keep your sense of humour! I hope things look better for you soon and I would be happy to exchange emails if you wish to.

Carole

I'm in your camp with being so tired. I am just diagnosed and have not started therapy yet. I don't get serious infections either, just a host of autoimmune type symptoms. I would think there would be some type of medication to deal w/the achy, sick feeling and total lack of energy. My doc had given me vicodin for severe headaches and I find that helps w/flu like symptoms-it's like taking advil-just takes the edge off the sick feeling. Does anybody know of any meds that help?

My social life is seriously affected and thank goodness my friends understand. I find communicating via phone and computer works best for day to day interaction. I hope you get some energy...let me know if and what worked

I began therapy a few months ago to deal with, you guessed it, the ANGER that I feel about the changes and losses in my life because of this illness and the exhaustion, the doctors, the symptoms, the misunderstanding of loved ones, the isolation, the pain, the depression, the sporadic nature of the beast and the endless questions about my illness that never are fully answered. My doctors, of which there are many, agree on one thing: "You're complicated." Expect the unexpected has become their motto when treating me. And I am sick and tired of being sick and tired. Anyway...this is how I feel on the rotten days when I am confined to bed because of a break-through infection of somekind and I feel like do-do. Which is my situation today. I'm usually pretty willing to go with the flow of the illness and keep on working for better health and a new and better life, but some days it just aint there and I'm pissed. Well at least it will keep my therapist in business for awhile. And I'm glad she's there to vent at and to teach me willingness and acceptance regarding my situation. Cause I gotta make peace with it and cohabitate with it. And get used to a new life.