The World Doesn’t See My Illness…But My Son Does!

My son Ash is eleven years old and for so many years I have felt he is a very important part of my support system. It upsets me that I think this. This shouldn’t even be a fact. I shouldn’t need to depend on him the way I do, but this kid is my best friend, this kid is my hero.

When you have a child, the child’s needs come before your own, but even the healthiest mums need time to recharge their batteries.  Balance is important for everybody, but especially for someone like me who suffers with two chronic diseases; Fibromyalgia and Endometriosis. Each condition has their own set of symptoms that provide limitations with what one can and cannot do.

It was only about four years ago that I was diagnosed with Fibromyalgia after having a traumatic lumber puncture to drain fluid from my brain.  During this time I found I have a birth defect where the drainage tubes are too narrow.  This was one of the reasons for many years of debilitating migraines.  Even though I am stubborn, strong willed and determined, Fibromyalgia, along with whatever else is going on with me, leaves me feeling very low, fatigued and in pain.

Two years ago I moved to Bordeaux in France with my husband and son.  The change in scenery and temperature has done me the world of good, yet those old demons still haunt me.  The ones that say I’m not good enough or healthy enough. The ones that constantly niggle in my ear telling me I am a rubbish waste of space Mother and Wife.

I am consumed by guilt. Some days I shake it off! Some days it tears me down. I could never leave, nor do anything sinister to myself, but there are times I just wish I was gone.  Not gone as in dead, but gone as in I never existed in the first place.  Then of course I feel guilty for feeling that way.

I tell myself that I am raising my son to be a man that is confident, understanding, loving and caring no matter what the situation, but I can’t help that my own needs come into play more often than they should.  I feel almost like a liar with ulterior motives.

I am blessed to be a mum. I know many that have had that choice ripped away from them. I had the choice taken away from me to not have anymore and after such a difficult journey I have finally accepted that it is not going to happen.   I have realised the need to put what I have already before what I want, because this life is hard enough.

I am so proud of Ash, he is my biggest achievement.  When I think I have failed in every other area of my life I often just watch him and think “wow, I created this”.  Then I get told off by him for staring at him like some sort of weirdo.  Family and friends always say “wow Emma, you always seem to get knocked down so many times, yet get back up again fighting!” – Ash is my reason. I’m not saying it is easy to keep on with this fight. There are times especially when my body and mind are both against me at the same time, that all I can do is cry. I try so often for Ash not to see this side of me, but sometimes it is unavoidable. Being a mum I can’t just lock myself in my room all day I have to put on my mask and be the person I want to be, instead of the person I feel.

Ash started a French school two years ago in September knowing only a few words in French. His first school report was so disappointing with many sections ungraded, as he couldn’t do the work. I felt terrible, like I had let him down and I really questioned whether moving to France was the best choice for us. We decided to stay and see how it goes as other areas of our lives were improving. I am glad we did.  His last report was glowing with mostly A’s and B’s.  He appreciates everything he has.  He barely asks for toys or sweets because he knows money is not so great for us at the moment. He keeps his bedroom clean and well organised.  He is a helpful all-round amazing boy. I know every child, dependent on age, should have some level of responsibility in the house in order to receive a weekly allowance. Ash goes above and beyond by helping with laundry, dishes, hoovering, dusting, taking out the rubbish and recycling, checking the post, translating (attending medical appointments with me, making and translating phone calls and letters) and helping his dad with the weekly shopping.

I have episodes of fainting often. I can imagine this being scary for him, but he knows exactly what to do when this happens.  He always puts his fingers under my nose to check if I am breathing.  Luckily, I have come round quickly and have never needed medical attention.  If I look sad he asks what is wrong, or asks if it is my period, or my endo, or a fibro flare. Yes, he knows too much!  I think when you have chronic illnesses or any long term illness that affects your life the people around you should have some knowledge of what is going on.  Obviously I don’t tell my son everything but I have at least explained to him what the conditions are and about the treatments and side effects. I think it is important Ash understands why I am the way I am and why my emotions often resemble a rollercoaster ride.  Children can often take a situation which escalates in their mind and they often think worst case scenarios. So I think the direct honest approach is best.

I asked Ash what he thought about me being ill and he replied, “It is quite sad, and makes me worry sometimes. You are brilliant Mum though, because you care for me and you just love me! ”

Sometimes we plan, well I say plan loosely, because every day is different in terms of fatigue, mood and pain. There will be days I will push myself so we can go to the park or meet friends or whatever is on the agenda. Afterwards I feel physically drained though.  Sometimes I wake and just think “no, I can’t cope with today”, but then I force myself to get up and do something productive. Then there are other days I cannot move and on those days we watch movies, play board games or I just sleep. My illnesses are so unpredictable that often I have to cancel plans. I hate this! But it is worse when I have to cancel plans with my son. The look of disappointment is heart breaking. Many times I have resumed my plan, pushing myself to the limit.  I am really trying!  I know I get sick of me, so I am sure it becomes tiring and frustrating for Ash. I have often felt I am emotionally suffocating him so I have made more of an effort to socialise, so the pressure is not on him all the time to be stuck to me like glue. He has many friends, that he often sees which makes me immensely happy.

Recently I had the realisation my son was spending too much time playing video games, especially on those days when my pain and fatigue levels were shockingly high.  This was partly my fault for not monitoring and encouraging him to do other things. Now we have a rule where he can play or watch television for thirty minutes per day. Previously I felt he rushed everything to just get back to playing games. This new rule has made such a difference in his attitude. Plus I found out that he didn’t want to spend so much time playing video games anyway. He wanted to stay out of the way so I could rest. He wanted to spend time with me, but didn’t want to disturb me.  So now we both make a special effort to at least do one fun thing a day together.

I know I am not the perfect mum, but who is? I don’t think there is such a thing.  I try my best every day to manage my physical and emotional health. I try to do what is right to make me not be pulled into this black hole that I am forever creeping around the edge of. I try to balance fun, responsibility and education for my son.  I try my best and that is all I can do.

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4 thoughts on “The World Doesn’t See My Illness…But My Son Does!

  1. WOW, that is an amazing inight into your life. For sure never doubt yourself no matter what. Kids well, I found with my own, no matter what they know when something is wrong, and, no matter what you do to try to hide it, mask it or deny it they know, you have done the best thing by letting your son know and by doing so he now has a purpose to look after his mum, to which he will do now, no matter what he will always be there for you giving back to you what you gave to him to help shep him into the person he is today, and that is something to be so so proud of.

  2. You sound like an amazing Mum, so caring, gentle & kind. These qualities shine out in your son. There are many healthy Mums who haven’t managed to create such a loving & caring relationship with their children. Well done. “Courage” as they say here in France xx

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