Sunday, 18 September 2011

Fed up, Frustrated and Furious.

I think these are feelings that everyone will relate to at some point in their lives, to some extent. Whether it's because you're stuck in a job you don't like, you've been ill for a week or ill for 10 years - when you feel trapped in some way, these feelings occur.

They're not a symptom of chronic illness/disability, but if you are chronically ill (by which I mean, have a long term illness) I can't imagine not feeling it at some point.

ME traps you inside your own body. No, worse than that, it traps you in bed, on a sofa, in a wheelchair or in your house. It puts huge constraints on your life. It makes just climbing the stairs feel like Mount Everest, and cooking dinner like running a marathon.

It takes your dreams and aspirations, and tips them on their head. You long to fulfil your dreams - to create, paint, write, work… But you're stuck inside this body that physically cannot  do it. And yet you look well.

And I think that when you're being stopped from fulfilling everything you wish to, an anger develops inside you. But you can't go for a run - often times you don't even have the energy to punch a pillow - and so it just sorta bubbles within you, and erupts when the fatigue overwhelms you. For me it erupts in shouting and tears - often when I'm attempting to cook dinner. For my husband it erupts when he's playing games - the frustration just surfaces.

And this is where, as a couple, you have to not take it personally. My anger is in no way an attack at him, like his anger is in no way an attack at me. It's just feelings that have to be let out. And they have to be talked about. If you know where the explosion is coming from, why it is erupting when it is, and the story behind it, you can accept it and see past it. You don't take it personally, but you give them a hug, and you help each other through it. Not being afraid to admit how much you dislike the other's anger, but understanding it nonetheless.

Saturday, 17 September 2011

Hello :)

I never know how to start blogs like this, or how to begin an introduction. I'm not even sure what I want to say.

I've been part of a disabled couple for 4 and a half years now. I, Mrs, suffer from ME/CFS, and have done for 11 years. My husband, Mr, has suffered from ME/CFS for about 6/7 years, and was diagnosed with dyslexia and ADD at a young age.

I've never really known a relationship where one or both parties are healthy, but nonetheless, being part of a disabled couple requires adaptations. It requires patience and understanding, vast amounts of love, and strength to fight for understanding, and support to live. One thing I have noticed, is how rare disabled couples seem to be, and how little support is out there for them. I just hope that over time, this becomes somewhere where we can share the highs and lows, but also where you can come to find support and encouragement.

I would really love to hear from people in a similar situation, so please do leave a comment below. Also, if certain adaptations (colour, font, spacing etc) would make the blog easier for you to read, please do let me know!