Life after Guillain-Barre Syndrome ….. Choosing the Packet of Broken Biscuits!

If you have a partner when you get ill, it’s almost expected of them to stand by you, and care for you after you’ve been seriously unwell. I was in a relationship with someone when I got Guillain-Barre Syndrome, albeit only for a few months. He stood by me whilst I was in hospital, but the pressure and reality of what has happened to me, and the disabilities I am now left with pulled us apart.

Being single is a whole different ball game to being in an already established relationship. I don’t mean in regards to doing housework and looking after the children, I mean as a couple. Dating after Guillain-Barre feels virtually impossible. I’ve dipped my toes in the water, so to speak ….. And sunk!

The first and biggest obstacle is finding someone who wants a disabled girlfriend. Declaring on your online profile that you need a stick and a wheelchair is hardly sexy! A man can tap his chosen age range and post code in on a dating site and find a hundred single women who live close by. Why out of those hundred women would he chose the disabled one? It would be like going into a shop and choosing the chipped ornament, or buying that packet of broken biscuits!

So assuming by some miracle I’m lucky enough to win someone over with my charm and good looks (Ha ha ha, who am I kidding!!!!) then the real fun starts. Starting a new relationship involves looking one’s best. On a child free evening all I want to do is curl up under a blanket in front of the TV, catching up on all my recorded programmes. Dating involves taking the time to do my hair and makeup (Even at the end of the day) and deciding what to wear. Razor??? What’s a razor?!! I’ve not had to bother with one of those in a long time!!!! (Joking!) Seriously though it takes a lot of time and effort.

In all honesty, there are a few decent, kind men out there, who do have the depth and patience to be in a new relationship with me, and I recently met one. Unfortunately it didn’t work out for us due to a number of reasons. Hopefully my Mr Right will come along soon. In the meantime I guess I’ll just enjoy being not-so-young, free and single!

Life after Guillain-Barre Syndrome ….. Repairing Spaghetti Junction!

I’ve never been much of a night owl, and have always needed my sleep. Even as a child I would often ask to go to bed. Unfortunately my children don’t take after me! Since I became ill my need for sleep has gone off the richter scale! On a weekend if I don’t set an alarm, I can easily sleep for twelve to thirteen hours, and still be tucked up in bed by ten the following evening!

Needing lots more sleep in itself is not a problem for me. My daughters quite like the fact that we all head off to bed at the same time, and being single I don’t have anyone complaining that I’m going to bed too early! Fatigue, however is a massive problem for me everyday. I like to use the word “fatigue” rather than “tired” because I feel like a whining child when I constantly complain that I’m tired. I tend to use the term “extreme fatigue” to try and express that it’s soooo much more than just being tired, but I still don’t think people really understand how it feels.

It doesn’t seem to matter how much sleep I get, or whether I had my afternoon nap, the fatigue doesn’t go away. My fatigue levels are not always in relation to what I did the day before. Some mornings the minute I open my eyes I know it’s a bad day, even if I’d spent the day before doing very little. However, being taken out to the shops all day by someone is usually guaranteed to wipe me out the next day. I struggle with fatigue to some degree every single day, but some days are far worse than others. On these days even the smallest of tasks seem like massive mountains to climb, and I find everything over whelming.

I don’t have a very good understanding of medical stuff, and only got a “D” in my biology GCSE! From my what I can make out, the fatigue occurs because my body is so busy trying hard to get messages through my nervous system, in order to carry out normal activities like moving and walking. Because my nervous system has been destroyed by the Guillain-Barre Syndrome the messages reach dead ends, and so the brain has to find them a new route. Imagine driving through Spaghetti Junction and every corner you turn you are faced with a “Road Closed” sign, and eventually after trying several different options, you have to come off and take the country roads! Also my body is constantly trying to repair the damaged nerves, which is a full time and tiring job in itself! This is exhausting for my body and consequently it doesn’t have much energy left for anything else! I think this is also why my memory is so bad, as discussed in a previous post.

Luckily my children are wonderful and help me out every single day. I also have brilliant parents and an amazing network friends, who all chip in. Without everyone’s help I wouldn’t be able to live my life as I do. All the things that each person does add up to make a huge difference to my life, and I am very grateful.

Right, time for me to put the kettle on, get out my onsie and park myself in front of the TV with a bar of chocolate….. Don’t judge me, I’m extremely fatigued I’ll have you know!!!