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?

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?

Ah yes. The ‘outside’ consequences of these illnesses on life, such as school & work etc.

 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?

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!

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?

How long will it last?

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!