Feeling like a failure: the darker side of epilepsy

Today has been one of those days where nothing has gone right, nothing has been done and my head hasn’t stopped hurting. Today is just one of those bad days. We all have them don’t we. My only problem is, today is a bad day in a string of bad days. It is another day, in a line of about 3 days, where I feel like a complete failure at life. If I had the energy today I would have cried, but I don’t. I don’t have any energy whatsoever. I barely had enough energy to walk down the stairs this morning. After only being awake 1 hour 15 minutes I was exhausted, hot, my head hurt and all I wanted to do was sleep.

I have had a mild temperature for a couple of days now and have felt under the weather as the phrase goes. I think I am coming down with something, I am prone to water and kidney infections, so I am hoping the litres of water and cranberry juice I am drinking will flush any nasties away and help me feel better.

I am not always comfortable talking about being unwell, especially not on my blog, I like it to be more light hearted and I enjoy seeing the humour in not only living with epilepsy, but life in general and all the trials it brings. I am the type of person who, regardless of whether I feel like I have been run over with a double decker bus or I feel as fresh as a daisy, I will always go to work and do my very best. I have signed myself out of hospital on a late evening/early morning and gone to work the next day at 9am. It’s not in my nature to dwell on being unwell (I know you might be thinking erm… Jade… you blog about your condition, that is very true, but I blog for a different reason). The reality is, getting an infection when you have epilepsy is hell on earth.

Infections, certainly in my case, cause additional seizure activity in the brain. As your immune system fights off the infection, your blood count levels change, which in turn can impact on your medication levels, any medications you take to fight the infection, such as antibiotics, can also impact on the way your AED medication works, increasing the likelihood of seizures.  So not only do you feel rubbish, but you also end up feeling anxious about having seizures. It is not a great feeling at all.

Having not felt great since Thursday, I have achieved pretty much nothing over the past 3 days. I spent most of Thursday afternoon in bed, most of yesterday was spent sleeping as well and today I haven’t even had the energy to wash my hair. Basic jobs have been completed, the house is clean, pets have been walked (by the husband not me) and everyone has been fed and watered. However, nobody has seen a vegetable for 3 days, my list of baking to be completed is still on the side, I STILL haven’t hemmed my kitchen curtains, my office is in chaos and the poor husband spent his days off sorting out the garden, while I napped. Even writing all of this makes me want to cry. It makes me feel like such a failure in life.

We all have this ideal we set for ourselves, how we will be as a mum or a wife or just a person in general. The truth is I enjoy cleaning and tidying and “playing house” and, call me old fashioned, but I do feel like that is my role in the house. Whether you agree with that or not, it’s the way I like it and when my epilepsy stops me from being my best self I get extremely upset and downhearted.

The reality is, on days like today, I feel like I offer very little to anyone. How can anyone be remotely useful when they nap for three hours every day. My husband and family are great, they don’t care if I nap, in fact sometimes my husband encourages it. Not sure if that is because he is concerned for my health or if he just wants a little bit of peace and quiet, but it doesn’t stop me from feeling like I let them and myself down when I am poorly and need to stop and take a little time out.

I often say it is totally fine to take some time out, nap, have a sofa day and all that jazz and it really is totally fine. While I stand by this, and I know this is true, sometimes, it is much easier to offer the advice than it is to take it.

I guess I have to just keep reminding myself that this rubbish feeling will pass and that until it does it is OK to have a couple of bad days, to wear my glasses and to take as many naps as my body is telling me I need. I need to show myself a little self-love and remind myself that I am valuable, even though it may be difficult to see that sometimes, I do have a purpose, I am a tough cookie and I have come this far already, there is no room for quitting now.

I hope everyone can show themselves a little bit of self-love this coming week.