Glandular Fever Online

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?

I have only been on the receiving end of care for Glandular Fever, so I cannot comment on this experience.

 What is it like?

What is hard?

What has helped you?

You are so important in during this illness.

 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?

It doesn’t seem fair, does it?

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?