(cont. from Part 1)
So, around town I go with my rucksack bobbing about on my back and it's about this stage of the game that I begin to feel like I'm carrying a lead weight around with me. My shoulders, neck and back ache, and if that wasn't enough, my fingers begin to go into spasm. Now, if you're not familiar with the condition Raynaud's, you won't appreciate that having dead fingers and toes that turn completely white, is no happy vacation! So whilst I'm cursing the pack on my back, I'm also swearing at my digits to come back to life and be of some use. Coins are the worst, I tend to hand over paper notes and end up with a purse full of silver and brass to add to all the other weight I'm carrying. At this point I feel like the proverbial donkey laden with goods that are neither use nor ornament!
My favourite stall -- Chocolate and sweets. I know, I know, chocolate is bad for you! but it's just okay for me, for whilst I can't eat much, I can pop a square of delicious milky chocolate on my tongue and suck it till it melts. Of course 10 minutes later I'm regurgitating the stuff and at the risk of sounding disgusting here, I'll move on!
Gloves -- what use are they? No matter how thick they are, my fingers still have their moment of glory! And with that it's time to go home. It's no fun having scleroderma either. It's this I hold responsible for my swallowing problems and so many other changes to my life. Oh, I'm not complaining -- far from it, because in the grand scheme of things I don't have it too bad -- limited they say, and I do agree that it is in fact, limited! It certainly limits me in more ways than one. I used to be so active -- had my own business, even attempted building our own home, but all that's gone now and all in a couple of years. Yes, I guess you could say my life has changed but have I changed with it? Well, you'd have to ask my family about that. I don't think I have, but they may have other views.
Back home and I slump in the chair. The fire I made this morning needs more coal so I put on a few cobs, a log and also the kettle for a nice cup of coffee. TV -- should I turn it on or leave it switched off? I can't decide because so much of it is rubbish. It's either home makeovers, chat shows where people air all their dirty washing live on TV -- by that I mean all the scandal that goes on in the world, are there really such sad people out there who want a studio audience to sort out their life? I'm thoroughly amazed that someone would have an affair and choose to tell hubby live on TV with the guy she's having an affair with sat right beside him, and then it turns out he's a she really -- Oh, how complicated can life get, but then it does make life sound so simple by comparison. I could watch the news but it's always the same: political wrangling, global warming and a nice little jolly story to end the report.
My feed is almost half way through. The clock says it's time for me to work out plans for evening dinner for the family who will be starving to the point of malnutrition by the time they arrive home. If they really thought about it -- how do they think I feel having to make a meal I can't eat? Oh, I'm over that stage now. I can quite happily make a meal without drooling and it's a kind of routine rather than torture. I can tell you there were times though when I thought the world was against me and sympathy was nowhere to be found at home. People I meet ask, "How can you make a meal and not want to eat it?" The answer is, "I don't know!" I guess that's one obstacle I've overcome and the ultimate proof lies with the fact that I present a cookery show on the radio. That may sound hypocritical, but I actually enjoy cooking, always have, and I don't see why something I like doing should change! And to make things worse, the presenters at the station don't know my about my personal circumstances -- I don't want to be treated any differently. I wonder, though, about the day they discover the truth (and it's bound to happen) that their "Dish of the Day" presenter can't eat anything she makes. That doesn't sound good does it? There I am reading out the recipe and putting heart and soul into my show complete with " Mmmm" and "Gorgeous" as if I were devouring the dish on air -- if the listeners only knew!
Mornings can be a trial though. Some days I get up with an overwhelming feeling of nausea and then I inevitably vomit. There's nothing in my stomach and the wretching is the worst feeling in the world according to me. The scars I have across my stomach, bearing witness to the many procedures I had two years ago, still hurt and I don't think the muscles have ever healed. That's the pits, and these mornings are the worst I ever feel. Such days as these are slow from start to finish and the only time I truly hate my condition.
Hospitals! Where would we be without them? Well for a start I wouldn't be sat here giving my account of the day. So why do I hate them so much? The mere mention of the word causes collywobbles and a sense of dread. The appointment letter arrives and without boasting telepathy I know that it will say -- six months. Chances are I'll have mislaid the letter by then and won't have a hope of knowing what day or time I should be there. Out come all the drawers. This is my attempt of a filing system and usually I've either missed putting the letter in there or it's right at the bottom and I've missed the ###### appointment by two days. My need for a diary is paramount and I never think of buying one and if I did I would probably forget to fill it in. My apologies to the hospital, eating humble pie won't wear with the secretary and she makes another appointment for 2 months time. That's eight months from my last consultation!
My last appointment was long and in the end pointless. Five hours, a whole day, sat in a waiting room and then a 10 minute consultation with my Rheumatologist who ordered more tests in the name of medical science. Is this what my life has come to? A human laboratory mouse! Six months -- now eight -- for a brief chat and a whole lot of poking.
Socialising! Now there's a thing! My clothes are now 4 sizes smaller than they used to be and the figure I longed for as a frumpy 20 year old has arrived in a cruel twist of fate. I could have enjoyed it more in my 20s Oh, the thought of what I could have done with a figure like this and what I could have worn. Still, I'm having a late menopausal fling and all the clothes I looked at on plastic models -- I can now wear!
There's a downside though like so much of my existence. It's no secret that I liked a little alcohol -- a social drinker you might say! Now I'm stuck with a cup of coffee if the pub will make me one. Other than that it's soft drinks and I have to be careful with them, too. Orange or any citrus juice will give me heartburn so it leaves little choice. Of course my hubby gets a personal chauffeur to take him home after a night out as I'm stone cold sober. Thankfully, this only happens once a year -- how can I complain? And if you think it's no fun for me, think again! I can hold an audience without false courage -- thankfully I've lost none of that.
Disability badge! This is one small piece of card that has made such a difference to my life. Parking can be a nightmare around town and when the weather's cold it's a relief to find a parking space in front of my destination. It's also frowned upon as well. I've had an egotistic elderly gent approach me with an attitude so Victorian: "I hope that badge is yours." I rather wished it wasn't because that would mean I was normal. He was, of course, referring to my parking next to him in a better spot, I should imagine. I retorted with lifting up my jacket and flashing my tube. In the world in which we live I could probably have been arrested for indecent exposure but my message got across loud and clear and this man hung his head and apologised. That was the one occasion I shook with temper but I kept my cool and went about my business as intended.
In reality, my life is not so bad. There's so much devastation and hunger in the world and people far worse off than myself. I've kind of been there and done that! My family are okay, my daughter healthy and a hubby that cares enough about me for him to stick around even through all that I've been through! I didn't mention the pain -- perhaps it's better not to. At the risk of complaining and being a bore, I purposely left that part of my day out. I do have pain and it wouldn't be a true account without a mention. So there, I've mentioned it! And that's all I'm going to say!