About last night…

In around thirteen hours, I’ll be heading off to hospital. It might be earlier, if things get worse, but I hope not.

Really, I should be in St Thomas’ A&E now, but there won’t a doctor there who will know what to do with me, and I really don’t want to spend another night in the Clinical Decisions unit. One night, three years ago, with an elderly man snoring louder than I thought was possible, and a heroin addict throwing tables around because he wanted Methadone, Dad awkwardly asleep in an upright chair, Mum curled up like a cat at the end of my trolley. No, not again.

So in about eight and a half hours, Mum will call the specialist nurse and tell her I need to be admitted. She will start the arduous task of securing a bed for me to collapse on to, and the Specialist Registrar of my Dermatologist will ask Microbiology which antibiotic needs to be pumped into my bloodstream, to force the infection out. I’ll be begging them for every pain killer I can have.

I feel like a failure. I’ve always had a sky high pain threshold, eschewing pain relief in favour of distracting myself. Music and a good book are my preferred methods. But I have never known pain like this, and even my strong opiate pain killers aren’t really helping. The fact that I’ve cried with the pain has been my parents’ indication of how much pain I’m in.

My right foot has myriad ulcerated wounds on it, and some are on areas that were already severely nerve-damaged. Imagine how an ulcer on your tongue feels… Now imagine that ulcer is four inches long… And it has siblings, all over you tongue, cheeks, roof of your mouth and gums… Now imagine someone is pouring vinegar over them, and they are so deep you can sink your teeth right into them. You’re getting close to how this foot feels.

On top of that, my Bipolar Disorder has reared it’s head. It didn’t occur to me last week, when I was a cheery and getting lots and lots done, that I was in a manic phase. I just wanted to think I was happy. Well, I obviously wasn’t, because the Black Dog has its paws wrapped around me in a vice like grip. I was managing to tell it to shush and be a good doggy when I was with people, or chatting on line, but tonight it broke free.

To be clear, I don’t think I’m unlucky, or that I have an awful life. I am so grateful for everyone I have who, for whatever reason, love or like me. I have a home, food, clothes, luxuries like the Internet and my iPad. I have healthcare, and some health. I could have a far worse disability or illness. I do thank my lucky stars, for all the good things I have, and all the bad things I don’t. So what I said wasn’t for my benefit…

I sent a tweet in which I said I thought I should let the infection take over, finish me off, and then my lovely, wonderful parents could have their freedom. And I meant it. It wasn’t a cry for attention or help, it wasn’t that I wanted my ego massaged and to be told how great I am, it was, is, what I felt/feel is best. My mum was sat in front of me, still wading through my dressing change, and I wanted better for her. I wanted her not to have to worry, not to sleep on mattresses by my hospital bed. I wanted she and my dad to go to bed at the same time, to travel and have fun together. Without a bandaged burden to consider.

But, for some reason, they won’t let me go. And I can’t go without their help.

So you’re all stuck with me for now.

I wanted to say a huge thank you to everyone who sent kind and concerned tweets, who offered support and prayers (I might be a non-believer, but I do appreciate people taking the time and having hearts open enough to pray for me. I’m sending love and good wishes back to you). And though I don’t believe any of the nice things you said, and probably never will all the time I’m a Bipolar Bear, I feel incredibly lucky to have made such fabulous friends via Twitter.

I hope you all know how lovely your hearts and souls are.

With love and thanks
M xxxx


Filed under Disability

3 responses to “About last night…

  1. Your a little ray of sunshine & I love following your random tweets. Your a connection to a world I never knew was there. Your a huge inspiration for many people out there, we love your fight. Don’t you dare back down! Even in the darkest hours life is always still worth living, always. There are to many pretty dresses out there that you need to go buy and wear! As a parent I know the love you have for your child has no bounds, whatever the sacrifices. I hope to see you on the other side of this infection back to your chirpy self. Demand those drugs, listen to that music, read that book and remind yourself that even if right now it might not seem like it but – life is beautiful and so are you.

  2. judy

    the world is a better place with you in it. you can relate to others in similar positions, and by that, help them… never underestimate the value of the empathy and compassion you can offer to others.

    apart from that, each person in this world is unique and without you, the unique qualities you bring to the world will be lacking.

    stay strong and I wish you the best treatment and the best outcome from your time in hospital.

    with love

  3. Hi Melissa,

    I know that it’s nearly a week since you posted this, but it might help you in future or someone else in a similar situation. It was upsetting to read what you wrote about “giving your parents some freedom” after reading your earlier tweets about your family because it was obvious that you all love each other a great deal, and not every family is like yours.

    I recently read the book One Last Goodbye by Kay Gilderdale, whose situation with her daughter Lynn had some similarity to yours and your mother’s; Lynn was totally dependent on her mother for everything (feeding, toileting, washing, medication, and a whole lot more), as she was totally bedridden due to severe ME. As you may have read, Lynn ultimately committed suicide with some help from Kay. Kay wrote that, in the weeks after Lynn’s death, released from her constant responsibilities, she was always thinking she should be doing something for Lynn. She wrote that although she was able to do some of the things she and Lynn talked about doing when Lynn was better, the sadness of Lynn’s illness and losing her never left and she thought it never would. I’m sure your mum would feel the same way so don’t think it would be freedom for her as she certainly wouldn’t.

    (I hope you’re not offended by the Lynn/Kay Gilderdale comparison – I was talking about their situation during her life, not her death.)

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