To be perfectly honest I had no real choice in the matter. I was diagnosed with Raynaud's last year...or was it the year before, I don't remember really. What I do know is that over the last year my Raynaud's has progressively gotten worse and worse. When my doctor said, "It's terminal" I didn't think he meant it would get worse and worse, say like cancer. In fact I'm pretty sure he was referring to the fact that the phenomenon doesn't usually go away, once you have it, that's it. Yet, here I am, effectively house bound because I don't or can't make many arrangements otherwise. I can't really walk more than 150 yards (especially with the current weather) without my toes and feet going numb, my hands seizing up and people staring at my blue nose. The buses only come when they want to and I have no personal transport. So, stuck in these South Wales valleys that I'm not actually from -_-; . Still, I manage I make adjustments at home, I plan my outdoor excursions meticulously. Making sure I have enough warmth to get too and from my destination, ensuring that I'll be able to stay at my destination for some time, often declining to go places if their temperature isn't high enough. It's a damn nuisance and presents its own challenges from day to day.
Then I check my gas certificates, I live in rental accommodation. The last certificate had been done in 2011, eagles might spot that they have to be done every year that you're in the property. This was early 2013 that I noticed. So the gas engineer came out, poked around a bit and then capped it from the meter. My face dropped as he slapped one of those triangular stickers all over it. Apparently I had a bit of a leak somewhere. Now. Gas is effectively the only real source of heat in my property, even the sunlight doesn't get to it much (and we're still in winter as I type). I phoned the landlord. It took my landlord two weeks to get the money together to pay the gas man to repair the system. During those two weeks I had no hot water, no gas central heating, no gas fire. Middle of winter. We had snow!
Ah really fun. Now, washing my hands was a bit more of a chore than it used to be. In fact my primary method to relieve pain in my hands and feet was to bathe them in warm water for a short time. Of which was doing more or less hourly. You call that OCD, I call it coaxing blood into my fingers. Now some of you might say, "Aren't you on Nifedipene?" Well, that's true, I was. Coming into last winter, a doctor put me on the medication for a month. Two weeks into the medication I will happily report that my fingers stopped changing colour, they don't even change colour that much even now. They somewhat stopped going numb as well. However therein lies the problem. Nifedipene is not a cure for Raynaud's, it's not even a treatment, it's a way to prevent damage that an attack can cause. The pain for me, didn't stop. Same causes, same problems. I have photo's of my hands completely white from before (which is why I went on the nifedipene in the first place) but I wasn't getting the relief or the numbness, it was just full blow pain. I stopped taking it pretty sharpish but there was some damage that was already done. Now the colour change doesn't happen so much but the numbness is back (sometimes), which I'm grateful for (sometimes). So now, I get pain a little more frequently than I used to and why handwashing times went upwards.
So no hot water, no bathing (at least not in ice cold water), I was having strip washes with an electric halogen heater in the bathroom. (Still am). I boil the kettle to wash my hands but sometimes I just skip the wash altogether and just sit in front of the electric halogen heater. It's no substitute for the heat that a gas fire kicks out and even on full blast, I can't get the room temperature above 12C. So my gloves (two pairs) have been getting an awful lot of use. Indoors. I wear two t-shirts a jumper and a fleece, two pairs of trousers and three pairs of socks. I've ran out of Little Hotties and can't afford any more for a while, my microphone and dictation software is getting a whole new lease of life as the primary way to communicate with my 'linux' computer. (Hehehe....voice recognition fails). Tea making is up by at least 75% mostly just to keep my feet moving, but it helps to boil a kettle for two things rather than just one, hand washing, hot waterbottles and tea in one go!
I also don't need to put the milk back in the fridge so often, which means no needing the tea-towel to get the milk so often. Cooking is a chore anyway because I mostly have frozen foods. (I know, I'm just asking for trouble). What I tend to do is make up meals in advance so that I can just put them in the oven or microwave straight away. It 'can' make life much easier. That said, takeaways make things even more easier because I can microwave any left over pizza the next morning.
I can no longer warm all the rooms up at once or keep a constant minimum temperature throughout my home, but hey I'm on prepayment anyway and apart from a £25 cold weather payment I'm effectively scuppered to put more than £10 a week on the gas anyway. But hey, my gas fire and central heating twice a day were pretty good. I didn't mention that my thermostat for my central heating has never worked. Heh.
You might probably be wondering what my Landlord was doing all this time. Well, hunting high and low for the best possible deal of course, what else would they be doing, while I'm putting on more and more layers, warming up two to three hot water bottles to even remain sitting at my computer. (I use a hot water bottle as a wrist guard, one on my lap and one as a foot rest). If I didn't have the electric halogen heater and three pairs of gloves, this would never have been compiled but it goes to show, that it 'is' possible to live without heating for two weeks with Raynaud's.
But enough of the different things I've been doing and my penchant for complaining about the difficulties, more about the present day and the return of the Gas Man on day 14. Yes he came, he started the job and then got to the fire. Now, a gas check is pretty simple thing, a gas safety cert doesn't mean that you have to go into the internals of the fire, you're pretty much after the scent of gas and making sure it isn't clogged. Well. It wasn't clogged. The leak had been fixed...well, I say fixed, there was a new pipe installed instead. To install the new pipe fully however, he needed to get into the fire, which turned out to be over 25 years of age and apparently without a single day of service throughout its life. Within moments of my hopes and dreams of that night having a gas fire, instead I now sit looking at the fire with the new triangular sticker on it. Condemned to oblivion. Unfortunately, this innocent looking gas fire was also my back boiler so no hot water either.
This means my next challenge is to see how many days I can continue this well, I call it torture. Up here in the South Wales Valleys, with temperatures expected to drop a little further. I guess sitting here in a sleeping bag waiting for summer is probably not the most sensible thing I could be doing but hey what's life without a few challenges?
I'll probably update on any new techniques I come across to stay warm. Adding more layers is a given, but typing through mittens is an art form!
Now that I've written this I'm not so damn down on my situation either, which was really starting to annoy me. I wonder if “Self-Hate” can be a good source of energy...
Well... my Electric just went o.O My week has probably turned into one of my more 'unlucky' weeks going. Glad I have emergency ^_^
Good luck to all other Raynaud's sufferers out there! =D