On a Serious Note ...

 
It's time for a serious blog. This one is about my man having Chronic Fatigue Syndrome. I started typing about it a few weeks ago, but decided not to share it because it was so long (and depressing to read - I must have needed to vent that day!). The reality is though, living with a long-term chronic illness is not easy ... for the sufferer or their loved ones.

So, since this is my blog and what I share here may be helpful to someone else, I have decided to share an insight into our life with anyone who would care to read on ...

The Caveman has had CFS since his mid-twenties - around fifteen years now. It started with a bout of Glandular Fever a few years before that, which apparently caused what the doctors called "Cyclic Fatigue" ... meaning simply that symptoms of chronic fatigue came and went.

He would be well for a while, settle into a new job, then come down with CFS and lose that job as a result, be well again a few months later, find a new job, then come down with it again .... well, you get the idea. Most employers don't have a lot of patience with a worker who just can't get himself out of bed in the morning because of an "invisible" illness.

CFS is not a very well understood condition and was even less so back in the nineties. A lot of people just didn't believe it was a real condition, so the reaction my man got from employers was also exhibited by his friends, associates and even family members, who thought he was being lazy and should try harder. Never mind that, when I first met him, he had a great work ethic. He had a very physical job and loved it.  He was also incredibly fit, going to the gym regularly and playing competitive cricket every weekend - he was a formidable fast bowler - the epitome of the expression "work hard, play hard".
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After being cyclic for a period of time, it progressed into full-blown CFS. In the years since then, I have lost count of the number of doctors he has seen and blood tests he has had, with no clear answers as to what causes this or what can be done about it. Then there are all the times well-meaning people have said to us, "Oh, I knew someone who had that and they got rid of it by trying (insert random alternative therapy here)". We know it's natural for people to share ideas that they really believe will work and we are still open to suggestions. The fact is, every case is different and, after all these years, we haven't come across any definitive cure. He has tried dietary changes, lifestyle changes, hot/cold therapy, various vitamin supplements, crystals, massage, counselling (in case it was being triggered by something emotional) ... the list goes on. No-one can explain why he has had it for so long either.

CFS has had a huge impact on the Caveman's self-esteem and confidence. He is on a pension as he hasn't been able to work for years. He has suffered from severe depression as he came to terms with not being able to work and provide for his family. He has put on weight, but it is a struggle for him to perform even basic regular exercise to get rid of it. He still plays cricket with a local team during Summer, to try to maintain some level of fitness and self-belief, but he has had to give up fast bowling and focus more on batting - he has become a big hitter of the ball so that he doesn't have to do much running between the wickets. He gets tired, angry, frustrated and downright moody at times, because he can't live the life he wants to.

As for the impact on the rest of us ... well, I get tired and frustrated too. We joke that he is my fourth child, and it's true that I often have to look after him as well as the kids. The fact that he is at home full-time, while I've been a full-time mum, meant a major adjustment to our relationship - most couples get a break from each other and the "daily grind" for at least a few hours a day. I sometimes envy my friends who have fit, healthy husbands - I know they don't cringe at the thought of other people asking what their man does for a living. Then I feel guilty, as though I am letting my husband down by even thinking that way.

It's hard on the kids as well. They know their Dad can't do a lot of running around with them. They don't get to see him going off to work every day like all the other Dads. They know that, because of the lack of work income, we can't afford to do a lot of the great things they see their friends doing. As much as we've tried to shield them from it, they have even heard other people talk about what their much-loved Dad "should" be able to do.

Those things hurt. The Caveman worries enough about the example he sets for our kids. Like any decent father, he just wants to be a good role model for them.

Despite all this, we do look for the positives. He enjoys being a full-time Dad. He has seen milestones that other Dads often miss out on. When he has the energy, he helps out at school and with any other activities our kids are involved in. He is a good husband - my best friend, in fact - which means us being together 24/7 is not always the hardship it might be for some couples. He is very supportive of my efforts to get back into the workforce and I know that, if I get a job that doesn't fit in with school hours, he will pick up the slack for me where the kids are concerned.

He is a genuinely funny guy, as well as being easy to talk to, and we usually find something to laugh about in almost any situation. When we have had an added hardship to deal with - my post natal depression, his father's death - I have admired the inner strength he has shown. He is optimistic about getting healthier (and back to work) as time goes on and I have faith in him achieving that goal.

Of course there are difficulties, especially if he is having a particularly bad day, but we work through them together. In many ways, this experience has made us stronger as a couple and closer as a family.

This journey through CFS has a big impact on our day-to-day lives, as well as our relationships with other people. We have learned to take each day as it comes and accept that there will always be others who refuse to believe it's really that bad - it's another one of those experiences you just don't understand unless you go through it yourself (and we wouldn't wish it on anyone).

Ours is certainly not the only family living with a chronic illness, nor do we have the worst one to deal with. We work on keeping our sense of humour and being thankful for what we do have ... making the most of the life we have now and trusting that there is a brighter future ahead.