Thursday, 28 March 2013

The Truth about CFS/ME


Although Chronic Fatigue Syndrome (CFS/ME) is an illness recognised by most, if not all medical professionals, many individuals still think the dictionary definition for CFS/ME is or should be, lazy can’t be arsed people who like complaining, don’t know what hard work is and just need to get on with life. They often think we are attention seeking or it’s all in our heads and use the fact we are fine one day and the next could be a bad day as proof we are making it up.

CFS/ME affects each sufferer differently. Just like no 2 individuals are the same, it’s quite rare to find 2 who suffer with exactly the same symptoms presenting in exactly the same way. There is a scale, just like there is a scale for other illnesses and syndromes. My bad day could be what another describes as their good days. With that in mind, I would like to attempt to describe what my bad days are like.

Most, if not all, of you will remember a time when you’ve had a hard day. At the end of the day your tank is empty, you have nothing left to give. Physically emotionally and mentally you are spent. You may have even sat down somewhere and thought how am I going to do the washing up or walk up the stairs to bed or even just get changed for bed as there is literally no energy left, you brain is sending the signals to move, but the body is so tired it’s not listening!

Take a moment to think about and remember that feeling. I now want you to put it to one side, and think about a migraine you’ve had, or if you’re lucky enough not to have had a migraine ever, maybe a particularly bad headache. Think about the dizziness you feel, how bright lights hurt your eyes, concentrating on talking to someone can make you sick, everything just seems fuzzy, it’s like someone has wrapped cotton wool around your brain and you can’t think properly.

Take a moment to think about how you’ve felt, what emotions and feelings you’ve had, now put those feelings to one side too. Finally I want you to think about the first day you started an exercise regime, the first day you may have pushed yourself to hard and the day after everything aches. Walking upstairs is painful, you discover muscles you didn’t know you had before, bending down to pick something up is groan worthy and you pray the feeling will stop soon, you dread doing another day of exercise and are sure the trainer is trying to kill you!

Take all 3 of these feelings and wrap them into 1, imagine waking up and feeling like this, knowing it doesn’t matter if you sleep for another hour, 2 hours or even all day, this feeling isn’t going to pass. This is what you are stuck with day after day.

These are some of my physical symptoms of a bad day; there are other emotional and mental symptoms too, such as depression. When friends are outside enjoying the sun (I’m sure one day it will come out again!) in the summer and you can’t even sit in the garden because the bright sun hurts your eyes or you can’t go to toddler groups on a weekly basis because some weeks you're having a bad day and when you do go you find everyone is so clicky and no one will talk to you because you aren’t there enough to get to know people. It gets to you, you start to feel down and eventually the depression kicks in.

There have been times of depression in my life directly linked with the illness. At these times I’ve been too ashamed or embarrassed to admit to anyone about what I’m thinking or feeling. Worried others will judge me, think I’m being week or stupid or tell me to just get over it. There have been many times I have been asked questions by health visitors, DR’s and even my therapist and rather than telling the truth, admitting I’m struggling and getting help have just lied and denied all knowledge of the depression.

Some of my other symptoms include short term memory loss, on one recent occasion I had an appointment with my therapist, I arrived 20 minutes early, parked up and picked up a self-help book I had been reading and I read a particularly important chapter. Many things stood out to me, things I wanted to remember and ask her about. The meeting time ticked around and I put my book back into my bag and walked into the building. After a quick conversation she asked about the book, she asked what I thought and what I remembered from it and if there was anything I wanted to talk about. I couldn’t remember anything. I knew that I had just read it (although she didn’t) but the content of the book, all those things that were so important to me had vanished out of my head.

Situations like these are embarrassing and difficult to explain especially as people don’t realise its part of the illness. They may joke about having a bad memory or about you being a liar when you say you remember but then can’t recall any of it when asked, the memory loss and the jokes make you feel stupid and small.

Having a conversation is often hard, you lose concentration for just a second and your train of thought is gone, you forget what you were saying, or what question they have just asked. Embarrassingly you can walk off mid conversation, not because you are being rude, but because something else has come into your head or someone has called you and you’ve forgotten you were having a conversation. You can become known for being scatty and forgetful when in reality it’s all part of the illness.

Then there is also the sore throats, swollen glands, flu like symptoms, dizziness, excess sweating, sleep disturbances and insomnia (like you need another excuse to be tired!) that not only come on the bad days but plague the good days too.

I think it’s important to point out at this stage that when I talk about a good day I don’t mean I’m able to climb Everest or trek in the Amazon, but I can take the girls to a toddler group or meet a friend or have a therapy session or do the weekly shop without feeling so completely overwhelmed by the stimulation around me. Can I also just stop here and point out the use of the word OR not and, never and, just or. A good day is relative to the bad days.

A good day is not a day I feel normal, but a day I don’t feel so bleak, so low, so exhausted, so empty but a day I can enjoy my family, see the good in the world and do a ‘normal’ activity.

I’m not often honest about my symptoms or emotions surrounding my diagnosis. It’s taken a long time for me to come to terms with this new way of life. I often feel like I’m trapped in another person’s body. I miss the days when I could jump in the car grab some friends and go to Birmingham or reading just for fun. The days I would get home from a long day at work and go for a 5k run and still have the energy to go out for dinner with friends.

Slowly I’m coming to terms with and accepting my illness, I pray that one day more will be understood by medical professionals. The why questions and the how can I recover questions will have definitive answers. But until that day I hope people will be more understanding and kinder to CFS/ME suffers when they say they are having a bad day or even a good day.


On a completely different note, the BiB (brilliance in blogging) award nominations are now open, if you like what you see please nominate me in the 'family' or 'lifestyle' categories. Its just 1 click and a short form away.
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