It’s over now, I am reliably informed. It’s autumn and there’s nowt we can do about it.
Well, good. I dislike the summer. I dislike the heat and the sunlight and all that it brings with it. Its sunburn, hayfever and being bitten by bugs and its tourists and festival-goers and overheated cars and daylight for twenty hours out of twenty-four.
For me, the worst of these is the heat. Now, here in the UK we don’t get that much in the way of a summer, as a rule. Of recent years, we get a blinding couple of weeks in late April and another couple of weeks at the end of July or the beginning of August and maybe, like this year, a stupid week or so in late September and the beginning of October.
This week, records were broken. It got to about 30 degrees (C) and there has not been a cloud in the sky.
“Isn’t it a lovely day!” people exclaim as they pass me in the street. Well, I have learned that replying “NO!” is unacceptable. Saying that you do not like hot and sunny weather is like saying you do not like Christmas (don’t even get me started on that – I’ll save that for December), or like saying you like to kick puppies and kittens. It’s best to just nod and smile and get yourself back inside and out of this hell-on-earth as soon as your legs will let you.
For many people, like me, any raise in the temperature is a bad thing. I am, at the best of times, slow and sluggish. Turn up the heat and I come to a grinding halt. It’s akin to being hungover without all the fun of getting shit-faced the night before.
Hot, sweaty, head-achy, lethargic and with painful joints and muscles. Yay, summer!
Still, as I say, it’s over now and I can get back to moving with geriatric speed instead of with zero momentum.
Movement has been made easier, for me, over the past month or so, by another dramatic change in my medication.
After thinking that I was going through another relapse, I contacted my MS nurse and subsequently got to see my neurologist, my GP and the Pain Clinic.
The Pain Clinic is fairly useless, to me. They are there to tell you how to manage your pain. Suck it up, and deal with it. They gave me a booklet which is focussed on having chronic back pain and the things you can do to get you back to work, with a bad back.
I do not have a bad back and I am self-employed.
The booklet has a whole section about dealing with your negative thoughts and how you can, when you’re thinking straight, see that these are not correct and that you are being stupid, when you have them.
Well, I do not think I have negative thoughts and if I do, I do not think these are unrealistic.
The example given is as follows:
What was the situation/event? A friend I normally chat to just said hello and then rushed off.
What thoughts did you have? She’s fed up of listening to my problems.
How did you react? Upset, cross, embarrassed.
Your alternative thought: They may have been rushing for an appointment.
Your new feelings/emotions: That’s fine, I’ll see them another day.
Well, I think the person concerned, in this example, needs to get a grip, stop whinging and realise the world does not revolve around them. But that probably won’t be the right thing to say at my next appointment at Pain Clinic. I should fill in this form and play their game. I shall try to be honest and truthful with them and with myself. Let’s see…
Event/Situation: My neurologist tells me that I cannot have Sativex as he has no-one on it and doesn’t know enough about it and, subsequently, the Health Authority will not pay for it.
Your thoughts: That’s unfair as I have used this medicine, for more than a year, and I know it works for me. I also know that there is clinical evidence that it works for others. NICE even agree and have allowed it to be prescribed to people with MS.
Your feelings: Upset, angry, worthless.
Your alternative thought: People like me are not worth the money of a comparatively cheap, harmless drug and the system would rather have me on morphine so at least I shut the fuck up.
Your new feelings/thoughts: Frustration, anger, incandescent rage. I’ll make sure everyone knows about this travesty. I shall take it further. I shall shout about it from the rooftops if needs be.
Hmm. OK, maybe that was a bad example. Let’s try another.
Event/situation: I pissed myself.
Your thoughts: My disease is progressing and there is nothing that can be done.
Your feelings: Upset, embarrassment, helplessness.
Your alternative thought: At least I didn’t shit myself. This is probably to come in the future.
Your new feelings: Upset, embarrassment, helplessness, suicidal feelings.
Right. that helped. Let’s see…
Event/situation: For the fourth time in a row, I did not achieve orgasm.
Your thoughts: My disease is progressing and there is nothing that can be done.
Your feelings: Upset, embarrassment, frustration.
Your alternative thought:
I should think about doing other things than achieving sexual gratification. It’s just sex, it doesn’t matter. I should ask, again. for the same medication that a man would get offered. My disease is progressing and there is nothing that can be done.
Your new feelings: Frustration, utter pointlessness, anger, rage, upset.
You know, I am not doing too well, here. I have not put these things into my Pain Management booklet, yet. I don’t know what help it would be. Maybe it would help them to know, but it’s not helping me. In fact, it’s making me upset, frustrated, angry and occasionally suicidal.
Can I put a “lol” in here? Is that ok?
Other than this nice wee booklet, I have also had my medication changed. It was not a relapse at all, but was just the side effects of the Carbamazapine/Tegretol. I am off this drug now and on a whole bunch of others.
I am moving very well, at the moment, and my pain is reduced but far from gone. For this, I am now on Tramadol, having refused morphine. As I said to my doctor “I have an interesting relationship with alcohol”. I really do not need something else to smile it’s addictive smile at me.
You can’t have clean, non-addictive, pharmaceutical cannabis but you can have clean, highly addictive pharmaceutical opiates. As much as you like. Knock yerself out.
Let’s change the subject, eh? What else has happened over this last few months? Family stuff.
Well, my eldest child left home. Despite everyone telling me that this is an upsetting thing, I feel it to be a good thing. He is moving on and living a life and, surely, this is what one’s job as a parent is all about. I feel proud and pleased that he has turned into a strong, independent, adult human being. The six-hundred miles or so between us was a bit of a shock as was being informed of the move via Facebook, but this is the twenty-first century, after all. Good luck to him, I say.
My youngest child and I secured a victory over her school, where she is in her final year. The school reports to be an arts school and is situated in one of the most liberal, freethinking towns in the UK. The school has had a change of head teacher and the new one is trying to crack her draconian whip. Hairstyles and colours, styles of clothing, jewellery and any semblance of individuality that did fall within uniform stipulations are now a matter of severe chastisement.
I was called in to school to discuss my daughters appearance (because teaching young girls that appearance is such an important thing is really clever, right?) and we ended up getting an apology from them. Boof-ting, as my daughter might say. Although I am not 100% certain of what this means.
Another triumph on my part was being asked to contribute to a fantastic publication that goes by the name of Mookychick.
Mookychick is a weekly online magazine for alternative women. We regularly feature alternative style, beauty, health, relationship and careers advice, music and general alternative culture. If you look closely, you’ll see we’re into social activism and come up with how-to guides on everything from casting a spell that actually works to making a fruit bowl out of a record. These are life skills we’re talking about!
So I wrote about things to do when you’re proper poorly. And I got the article approved and published on this wonderful, geeky, sassy, clever site. I am planning to annoy them with further submissions. Like when you accidentally speak to that annoying bloke, at the pub, who then won’t leave you alone? That’s me that is. They’ve shown me a molecule of interest and I have taken that as a offer to be a fully fledged Mookychick.
‘Moff now, to read. eReaders. I can read again. Isn’t technology fantastic?
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