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?

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?

 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?

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?

 I have heard stories about some wonderful organisations that have held job positions for months and those that allow shorter hours and work from home. I applaud you!

 Then there are those that seemed not to care and worse, not even try to.

Some organisations have illness allowances or special consideration (schools & universities) for this sort of thing. This is great. However, we have to jump through a lot of hoops to get the paperwork done.

 For example, work will give you leave if you have a doctor’s certificate. So we need a doctors certificate – easy, right? NO. We can barely get out of bed – do you know how much energy it takes to go to the doctor? More than we have! And then it will take us a week to recover from the visit and completely slows down the process.

Ok, now we need to fill out the institutional form – easy, right? NO. Form filling out requires decision-making. We are too damn tired to hardly move, let alone think clearly.

So now we’ve filled out the form. All we need to do is hand it in – easy, right? NO. Some institutions require us to physically hand the form in. HELLO! What do you think is wrong with us in the first place!?

 But, to be fair, it may be hard for organisations to truly appreciate what these illness are like, especially if some ‘leading experts’ say CFS doesn’t exist. And perhaps there are scammers out there trying to capitalize on actual suffers, who knows?

So what do we do about it?

I’m writing about it and providing a place for people to share their story. If enough people want to help, we can change this.

 What can you do to help?

Emotionally

This is hard. Even now, this is the hardest to write about. I guess that therefore might make it the most important.

One of the most obvious reactions is frustration. Frustration that you got sick in the first place, frustration that your lifestyle is now completely changed and frustration that there is no cure or definite ‘end time’.

As a person who likes to plan and prepare, this was particularly hard for me. While broken limbs are no fun, at least there is a usual 6week recovery period. And during those 6weeks you can at least still do school, work and socialize.

In our case, it is our energy that is broken. This is harder to deal with and harder to fix.

Sadness & Depression. This is the lowest I have ever felt. It seems like a vicious cycle because you are depressed and therefore want to curl up and cry and are not motivated to do anything. Not doing anything is depressing though, so then you get even more depressed. What sucked was that I could not even escape into the sweet relief of sleep, because I had trouble sleeping (quite torturous really – being too tired to even move, but not being able to sleep; like being stuck in horrible limbo).

From speaking to others who have had Glandular Fever and Chronic Fatigue, we agree that sometimes it is worth not resting and doing something like hanging out with friends. While you may spend the next week recovering in bed, mentally and socially you feel better and, let’s face it, everything is easier to handle when you are happy.

This is where friends and family are critically important. Their support and understanding means the world – I cannot even begin to express my gratitude.

I have seen sites where people say they have been suffering from Glandular Fever for many years, and even some that say to just accept it and put up with mediocre energy and health.

I cannot comment on their experience or point of view, but I can tell you this: to keep from spiraling into a hopeless depression, it is better to be hopeful and optimistic. Have faith that you will recover. Realistic or not, I feel better when I believe that I am getting better.

 What about you? What was the hardest part for you?

 What is it like?

What is hard?

What has helped you?

 This illness is hard because we do no want to be in this situation.

We want to have the energy to be able to do things, even simple things like sit and chat for a while. So when the social situation comes up where we are enjoying ourselves, we already feel pressure to stay. It is like balancing on a blade, easy to tip either way. So then when there is any extra pressure to stay (out of politeness, embarrassment or being explicitly asked to), it is all to easy to do so. But this can be very dangerous for our health.

 I found putting checks into place against myself, such as setting a time limit before meeting with someone, really helped because there was a guideline for the other person and for myself.

 What’s really hard is when family and friends say things like “are you still sick? Surely you’re better now” or “why are you being so lazy – get up and do something!”. This is very unfair.

 Want to know what the difference between lazy and energy-sick is? The desire or will! We want to do things, but simply can’t. Lazy is when you don’t want to do something or cant be bothered. We would be bothered if we had the energy!

 So what can you do to help someone with these illnesses?

• Show that you care by being understanding
• Please don’t be angry or frustrated if we get tired
• Help us with physical things
• Show us that we are still part of the world by sending emails or cards

I found animals, flowers and nature helped. This might be just me, but to look at something natural like the sky or flowers, or pet an animal was calming and peaceful.

Fellow sufferers – what helped you the most?

Family & friends – what do you think?

Those who work harder and push themselves more get punished by getting more severe Glandular Fever and/or Chronic Fatigue and Fibromyalgia. We try extra hard to achieve and be productive and then end up suffering more…not fair, is it?

I know, I know! – this is where everyone says things like “well you pushed yourself too hard” and “you need to learn to slow down”.

Important note: There is truth to this; most likely we do need to reassess and find ways to bring balance and ‘down time’ into our busy lives. But do you think telling us that it’s our fault and that we brought this illness onto ourselves is helpful? Not after the 100^th time it’s not!

So, this section is specifically for athletes and very busy people because the change from super-busy, constantly active person to lying on the couch for days at a time because you’re too tired to move is especially hard to adjust to. It’s going from one extreme to the other.

I would love to hear from fellow athletes, academics, and busy people. How did you cope with the adjustment? What are you doing now to find balance?

Athletes in particular have a hard time, because being physical is what you do! You spend hours and hours making sure your body is in excellent physical condition and spend months training your mind to push through mental barriers and then WHAM you go to being unenergetic, unmotivated coach potato.

What makes it worse is that your team mates/training buddies and competitors are continuing to train and get better. Plus, you have no idea how long it will take for you to start training again.

Is it better for you to over-estimate? But this again is hard to adjust to and can just lead to you feeling more depressed. Or should you under-estimate? But then if you don’t get there, you will feel bad also.

I took some consolation from the knowledge that other top athletes have battling with and overcome Glandular Fever. I read that Stephanie Rice struggled with it for two years – and while those years must have been hard, she was able to compete again.

So, there is HOPE.

I think you need to accept that your body will not be back to the state it was for a few months, but it will happen. Just be patient and optimistic.

What about you? Do you agree? Disagree? Comment?

How do I know if I am getting better?

How do I know when I need to rest?

These are just some of the questions you ask yourself while experiencing Glandular Fever.

Doctors and books will give you some indication as to what you can expect, but I believe nothing is as good as hearing from others who have gone through the same.  One of the hardest things about this illness is that no one can tell you exactly what to expect. While everyone’s experience will differ, I believe by sharing our story we can at least help prepare and support those going through it now.

What you may expect PHYSICALLY

Here I am not just talking about the initial stage of sore throat, fever and swollen glands. I am talking about what to expect afterwards. (Don’t get me wrong; this first bit is hard too – I needed morphine, anti-inflammatories and a few days in the hospital). But once this stage passes, the real challenge begins.

One of the most interesting things I found was the various different types of tiredness. I know – ‘types of tiredness’, what on earth do you mean?! Before experiencing Glandular Fever, I did not know so many different types of tiredness existed!There is the really really deep tiredness that feels like every bone and every cell in your body is just exhausted. Then there was the headache-y tiredness which is more like a warning that you are pushing yourself and need to back off. Or, worst of all, when you feel so tired all you want to do is sleep, but you can’t sleep, so you are stuck in horrible limbo for hours.

Glandular Fever quite often also affects the spleen or liver. Mine was my liver. Who knew that liver’s could hurt? I sure didn’t! The pain was hardly bearable at the start, but then later it only hurt when I was starting to get tired – a handy little sign from my body to slow down!

Now, 6 months later, I am feeling much better – I only need short naps during the day and feel almost like my old energetic self when I am awake. Something that really helped me feel physically better is when I started feeling mentally and emotionally better.

Please visit the section of “What you can expect mentally and emotionally” for more.

Everyone’s experience will vary. I would love to hear about yours!

Especially if you have or have had Chronic Fatigue or Fibromyalgia – these are obviously much harder to deal with and a different experience again.

Please, help others by sharing your story!