Saturday, 14 May 2011

Don't Bring Me Down

Someone wrote a comment on yesterday's blog saying I wasn't 'fit to write on this blog' and what I was writing was 'wrong' and I should think of 'the young people'. In my experience 'young people' tend to be curious and are able to find out anything they want on the Internet so reading my blog is hardly going to scar them for life. It amazes me that there are still people out there who think that illness, any illness, should be kept hidden and not talked about, as though it is somehow shameful. I've read the complaint several times now and I'm not even exactly sure what it is this person is complaining about. Is it the descriptions of the treatment? The way I talk about my feelings? The fact I comment on other things? Or just the fact that I am writing about PH at all? As for being 'not fit' well I acknowledge that I am not an expert on the subject. All I'm writing about are MY experiences, MY feelings and how I'M coping with it all, I'm not speaking for everyone, nor would I even attempt to do so. I am fully aware that I am not the only person with this condition but I cannot write about their experiences because a) I don't know them and b) their experiences will probably be different from mine anyway. There are plenty of websites out there that give the technical ins and outs and different perspectives on the subject, and there are websites with forums offering support and a chance to chat with other sufferers. I am not claiming to be anything other than a blog. If people find it interesting, informative or helpful then I am glad to have helped in some way, if they don't then I'm afraid that is their problem not mine.

PH doesn't just affect the person with the condition, many fail to realise that it affects everyone close to that person. As caring mothers, fathers, wives, husbands etc we try to protect our relatives and friends from as much as possible. It is OK to be angry, afraid, happy, or just fed up. Why shouldn't it be? It is OK to feel these things without PH so why not with PH. What is not OK is to keep things bottled up to such an extent that it changes you and your relationships with others. I have two sons who are just starting out on their adult lives. One is in a good, steady job the other hopes to go to university. Both understand I'm ill and both I'm sure worry about me but will I constantly pull on their heart strings and make their lives miserable? No I won't, it is unfair. Of course I've cried in front of them and my husband, they have all felt my anger on occasions or been frustrated because a trip out has had to be cancelled because I'm not well that day.This blog will hopefully show that having PH and the feelings that go with it are nothing to be ashamed of and are normal for any illness. I make no apologies for that.

So why do I do my crying in the bath or in the ladies loo at work?

When I was first diagnosed I was attending a clinic at the Royal Brompton for a follow up after having the RHC (Right Heart Catheter) and I was sitting in the waiting room with Peter when this woman was wheeled in by a man I presumed was her husband. I lent over to Peter and said 'God I hope I don't end up in a wheelchair.'  I watched her a little longer out of curiosity when suddenly she glanced up at me, in her eyes was pure hatred. I didn't know what I'd done to provoke this reaction so continued to watch her more discretely. It soon became apparent that it wasn't me she hated it was everybody. She spoke to the man as though she'd just scraped him off her shoes and called him every name under the sun, complaining about everything he did for her. At first I thought they had had a domestic before coming out until he presented her with a cup of something to drink. I don't know what he did wrong but her reaction was so awful I remember thinking there and then that more than anything I didn't want to end up bitter and resentful and taking everything out on those near me. She clearly blamed him for her condition and he had the air of someone who had heard it so often he was beginning to believe it too. Crying alone or kicking a wall in the garden relieves the tension and keeps me on a more even keel mood wise. Writing this blog is probably one of the best ways of helping myself because I can freely write how I am feeling and offload without seeing my fear, hurt and anger reflected in the eyes of someone I love. I can cope with my own pain but the pain of a loved one on my account would be too much to bare.

Ok enough of the philosophising.

Still no rain dammit, though the plants have now been watered and are looking quite perky. Now I sort of hope it doesn't rain as I don't want them getting too wet. Fickle or what?

Andrew started study leave for his AS levels on Friday. I am amazed at how quickly this year has flown. He has also possibly broken his toe during a game of football. He came limping home with a toe the size and colour of a plum but is currently refusing to see a doctor. I don't know what the treatment is for a broken toe, can they plaster it? Anyway the persuasion is on going as I write.

I am on ebay duty today as my eldest is at work and the watch he has up for sale is in the last few hours of the auction. There have been over 100 views and he has 5 watchers so hopefully he'll get a result.

The excitement never ends with Eurovision and Britain's Got Talent on TV tonight. Which one to watch?  Neither, think I'll go for a nice disaster movie instead.