Glandular Fever Online

Sick and tired of being sick and tired?

I sure am!  It’s been 18months since I was diagnosed, and while I am much much better, I am still unable to exercise or even go a day without taking a nap.

Here are a few tips on how to deal with ongoing fatigue:

Listen to your body
It’s trying to tell you something! It may take time and trial and error, but you will be able to learn signs of impending tiredness, and then stop before it becomes worse.
Every body is different, so everyone may have different signs. They could include:

Liver/spleen – in the earlier stages of my illness, my liver would start aching if I was pushing myself too much – quite handy!

Eyes – now I’ve learnt to look at my eyes – if they are dull, I know to be careful on that day.

Nausea – if I am feeling sick and not wanting to eat, I know I need a good rest.

Emotions – if I am feeling unneccessarily angry, upset or sensitive, I know I need some physical recovery time.

Weather – not what you’d typically think would make a difference, but you may be surprised! When the weather is humid and/or hot, I feel more tired and drained.

Reduce & Avoid Stress
Mental and emotional stress will drain you of your precious energy. Even if you are feeling alright physically, mental and emotional stress will make you more tired. This is good general advice for everyone, but even more important for sufferers of these illnesses.
I’ve had to learn to relax and take a ‘bigger picture’ perspective to not get so stressed about daily things at work, school and family.

Create checks and balances
Since my energy has increased, I am more tempted than ever to go out into the world and live!
But this is a trap, as bodies take time to heal fully.

Things you can do to make sure you don’t push too much, include:
- not scheduling too many things into your day, eg plan for resting periods
- don’t commit to too many things, because you will feel guilty and obliged to do them even if you are tired
- when going to a social event, tell yourself and others upfront that you will be leaving at a certain time. Get an understanding friend to tell you to leave, even if you feel like you have the energy to stay a little longer
- rest a little, even if you feel you don’t need to. This will ensure you have a longer period of energy, rather than using it all up and then having to rest a lot to recover.
Healthy eating
Good for everyone to do, imperative for us to do.
We need to give our bodies as much help to fight this illness as we can! Do so by giving it plenty of healthy, nutritious food and eating a broad variety of foods to keep up the vitamin levels.
Drinks lots of water and fluids as well.

Have the courage to say no
This one’s tough!
Have the courage to say no and rest. Even if others don’t understand. Even if they think you are being lazy.
This is hard because it seems like our society is programmed to be active and resting is considered lazy and bad. Just turn your tv and this message is constantly given; pay attention to ads for cold and flu medicines – rather than telling you to go home and rest, they tell you “don’t let the cold keep you from being active”.

I know it may be hard for family and friends to understand, especially months and years into the illness. Their patience may be running low and they may say things like “are you still sick? But it’s been so long”. Yes, you’re telling me!
Share your experience
Writing and talking about your illness will help.
It will help with you dealing with the illness and maybe even drawing some meaning from it. I’ve learnt many things from this illness and am very grateful.

You could write about the illness, plan your future for when you are healthy again, or affirm to yourself that you are getting better every day.
I drew little cartoon characters of my body’s cells fighting the virus cells. It kept me entertained and reinforced to myself that I am getting better.

What do you think?
Do you have any other things that help you deal with it?

I have been speaking with people who suffer from Fibromyalgia and many have said how well acupuncture has worked for them.

What I like about this type of medicine is that it looks at the illness holistically and tries a more proactive approach to treatment.

Have you tried it? What are your thoughts?

Alright, you’ve been diagnosed, you’ve had it for a while, you know it will take time to recover. So you know that you need to take it easy and not push yourself too hard.

So how do you know if you have accepted the reality of your condition, or have resigned yourself to a life of small amounts of energy?

Good question…. What do you think?

Perhaps the answer lies in your approach. Perhaps ‘acceptance’ is making peace with the fact that you cannot give 110% energy as often as you would like, but that it’s ok. I think this is easier to feel, the more energy you have.  Then maybe ‘resignation’ is done with an air of giving up, of hopelessness.

I think this questions touches on a deeper question of control. There are some things you can control, and others that you can’t. Our job is to figure out which is which.

In regards to the glandular fever, personally, I believe it is better to be hopeful and keep looking to the future. You WILL get better. Maybe sooner, maybe later, but it WILL happen. If it doesnt, isn’t it better for you mentally and spiritually to believe that it is?

My, so many questions! What do you think?

“Does it exist”?

 I cannot even begin to appreciate how hard it must be to be told that this crippling illness is ‘made up’ and ‘all in your head’. Wow.

 Yes, there are no conclusive tests for it yet, but how can you deny this is real? Anyone who says this clearly has not experienced it themselves.

 I am no doctor and have done very limited research into this, so I am not pretending to know anything that I don’t.

All I can say is that there are so many people suffering so much from CFS….. are they all making it up? WHY ON EARTH WOULD ANYONE WANT TO PRETEND TO HAVE THIS???

 Sorry, I’m getting a bit carried away here. I just want to illustrate my anger at disbelievers and extend my support to those who suffers CFS.

 If there are some doctors and ‘experts’ who say this does not exist, it is no wonder some friends and family may be skeptical. I guess part of what makes it hard to believe is the sheer duration of this illness. It has been known to last decades. Decades. This is understandably mind-boggling and hard to accept initially.

 This discussion leads onto my other post on Institutional support. Please check it out!

As friends and family please ask yourselves – is it better to listen to some ‘experts’ or support your loved one in need?

This is something I was not prepared for. I was told by the dozens of doctors I saw that I will feel tired and may get a bit depressed. THAT’S IT!

Mentally

Something that made the experience very hard for me was that the mental fuzziness that came with the illness. I couldn’t concentrate on things, I’d forget what I was saying midway through a sentence, and simply forgot a lot of things that were told to me. This was hard because I am normally quite mentally active and was unprepared for this ‘symptom’.

I often felt that I would have preferred a broken leg or similar, because while I would be bedridden also I would at least be able to be productive and contribute to work and do school work at least.

 All I can say is don’t worry, it WILL pass. Sooner or later for some, but it will happen. I remember the first day I didn’t have the mental fog – it was amazing! I had been foggy for so long I had forgotten how glorious it is too be mentally clear.

What did you experience?

How long did it take for you to get better?