If only all wibbles could be like this.

"a little bit of bread and butter, perhaps?"
Originally uploaded by girl_of_bats.

Our favourite cafe here in Leamington is Victorias, at 95 Warwick Street. We discovered it quite by accident. There was a particular shop we wanted to go to, we got there, there was a sign on the door saying "back in 20 minutes", so we decided to walk round the corner towards the main shopping centre and get a cup of tea in the first place we came to. We were expecting a Subway or a Cafe Nero, instead we spotted Victorias.

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It's a proper, traditional tea room/coffee shop. You are greeted and invited to take a seat, anywhere you like. The staff are neatly dressed, polite, friendly, and unlike Starbucks or Druckers, they are attentive without crowding you, and efficient without rushing you. Tea, whichever variety you choose, is leaf tea served in a proper china teapot, and coffee (all sorts of varieties, ground on the premises) is in a glass cafetiere. It's all done properly.

They get involved in local projects, for instance the recent Warwick Arts Week, and it isn't unusual to go in and find the "resident" artist sitting by the window painting, or a professional storyteller, or a nutritionist available for free consultations (a calendar of these things is kept on one wall but I like surprises).

On a more up-to-date level, David (the owner) also owns the upstairs which he hires out as meeting rooms, with the cafe providing refreshments. He set up wireless internet access which covers the whole building at a very reasonable rate too.

And the cake. Oh boy, the cake. When mum asked me to sort out her wedding cake, and I knew she wanted something that would taste GOOD rather than three tiers of alcoholic fruit cake in inch-thick white icing, I went to Victorias and David gave me the phone so I could call the lady who makes his cakes.

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You get the idea. It's a wonderful cafe.

So anyway, I was in town the other day, on the scooter, and pottering about as one does. I parked the scooter and pottered into Waterstones. The downstairs is mainly the kids section but, hurrah for them, they have a lift going upstairs, so upstairs I did go. Unfortunately going up in the lift I just drained. By the time the door opened, a ghost-white Mary staggered out and sunk to one knee.

Understandably this alarmed the upstairs staff a little, luckily I was able to reassure them, and after sitting down for a minute or two and drinking a bit of water (why does it always make people around me feel better if I drink some water?) they were happy to let me get back in the lift and go back downstairs.

I sat on my scooter for a bit and pondered my options. I wasn't really in a fit state to drive anywhere much. Victorias was just down the road. They know me. They know I am ill. They have had many conversations with me and know I am sensible. I turned the speed on the scooter down a bit, just to be extra safe - I would rather people got annoyed with me for going slowly than for running over their toes - and trundled off.

If Victorias hadn't been nearby, I'd have pulled into an alley to rest. But alleys don't have comfortable surroundings and tea.

I pulled up outside and somehow managed to organise my legs into getting me into the cafe. Alex, a lovely girl about my age or maybe a bit younger, helped me to my preferred table, a nice quiet out-of-the-way corner without too much direct light. Did I want my usual tea? Yes please. Then it occurred to me, I had to eat something before taking my painkillers. I picked up the menu but the text was all blurred, I couldn't even tell if I had it the right way up or not. Alex saw me turning the menu around and asked if I wanted something to eat. I said I just needed something before my pills, like maybe a bit of bread and butter. Alex told me Kate was in charge that day and she'd go ask her.

The picture above shows what I was given. A warm, buttered ciabatta, some crisps, and a small leaf salad with some cherry tomatos and grapes.

Furthermore, as I found out the next time I went in, Kate asked all the staff to keep an extra eye on me that afternoon as I wasn't feeling well. I did wonder why the four of them seemed to be having a rotating break that consisted of reading the paper a couple of tables away from me. I laid my head down on the table for a bit once, as a wave of headache washed over me, and raised my head again to see this and Kate saying "you don't have to have these if you don't want to, but I think it might do you some good."

She was right, and after about an hour of peace and quiet, an opportunity to do some breathing techniques, some food inside me and some sugary drink, I was in a fit enough state to get home safely.

I have no idea how much they charged me for any of these extras or even if they did. I know when I left I handed over a fiver and then put the change I was given straight into the tips bowl.

Starbucks wouldn't have looked after me anything like as well.

Lack Of Posting

Please excuse my lack of posting.

You remember the fits?

Well, they're still happening. I've been referred back to Neurology, but apparently there is a teeny-weeny (less than 0.5%) chance that they could have something to do with a reaction to the antidepressants I have been taking, Cipramil.

I wasn't taking much, they just put me on a half-dose (10mg as opposed to the standard 20mg) when I got ill, to try and cushion the somewhat inevitable upset of losing my job, my income, my hobbies, my mobility, my lifestyle, the friends that went with each of those things (except for the core of "real" friends who could accept my new limitations), and exchanging it all for 24/7 pain.

This seemed very sensible, and indeed it seemed to work.

Except fits are bad. It can only be a matter of time before I have one at the top of the stairs, or in the kitchen with a knife in my hand, or out and about at a busy road. At best I will find myself carted off to hospital and have a lot of inconvenience to deal with, at worst we could be looking at some real damage occurring.

With this in mind, I fully agreed to come off the antidepressants. It's not the best time for it, things are kind of up in the air, Steve's work, mum's wedding, plus the fact that the fits themselves are rather stressful... but getting off the damn things seemed to be a matter of urgency, and hey, I'm a fairly sorted-out, confident kind of person, so as per the doctor's directions I spent two weeks taking them every other day and I'm now not taking them at all.

And Oh Sweet Jesus. It is not good. I don't just feel "depressed". We're talking about mood swings, full-blown paranoia (Steve is getting it in the ear with stuff like "you're saying you don't want breakfast because you don't want me to have breakfast, because you think I'm fat!", I mean what sort of logic is that?), hallucinations, panic attacks for no reason I can figure out, sweats, shivers, bursting into tears because my biro doesn't work...

So anyway, this in mind, please let me off for not posting a lot. I'm trying to write a nice one...

Apparently I can expect withdrawal to last anywhere between two and four weeks.

Fundraising

Not much is known about ME and more research is needed into causes, diagnostics, management of the condition, drug control and possible cures. However it's not a killer (not widely at least) and research funding is hard to come by.

Every so often I get an email from an ME group I belong to. Here's the most recent:

On the 1st of September Simon Winnall and Ian Winstanley embark on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised will help fund the ME Research UK research programme. Simon's sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, "When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital. I hope by attempting to climb Mount Kilimanjaro we can raise funds and the profile of ME research." They expect that the climb will take 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level.

You can sponsor them by visiting their own webpage to download a sponsorship form, or you can sponsor them online via their own justgiving page www.justgiving.com/winnall . The guys will post a Kilimanjaro blog once they return so you can read about their adventures.

Steve looked across and said "oh, my mum's done that".

So let's not pretend these guys are doing something amazing by "funding the trip themselves" and struggling bravely up the mountain against all the odds to selflessly raise money for the poor, pathetic bedbound sister (get those violins going). It's two lads going on a fun holiday, with an aim to do something that grandmothers can do. BUT it is damn good of them to think of using their holiday jaunt to try and raise money to help people like Nikki, and I hope they do well.

I also hope they take lots of photos for her, and try not to make her be too pathetically grateful about whatever they raise.

Went to the park

No no no
Originally uploaded by girl_of_bats.

With Pip and the Littlun, Mon 7th August. Mostly, they ran round and I took pictures. It was fantastic until it started to rain and we had to go home. This picture is of them on the little roundabout, Pip is actually propelling it by pedalling furiously on these teeny-weeny little pedals and they're both laughing their heads off. I took a video of it as well as the photos. Very cute.

I think when I have a child, a good master plan might be to find a local teenager I can bribe to come to the park with us a couple of times a week, not so I can offload the child completely or anything, but so that I can do the "supervising responsible adult" part and they can do the "able to climb and run" part. You know, like they can help the child to the top of the slide and I can be waiting ready at the bottom to shout "wheeeee!"

I was hoping to write a better blog entry about it than this.

I Enjoy Sex

It's okay. This isn't the traditional post made by a disabled person whereby I insist upon shoving it in my reader's faces that I still have my sexual organs and the desires to go with them, usually by using language that is far too crude for my usual style and frankly cringeworthy and often smacking of desperation. To be honest, if there are still any muppets out there who think disabled people aren't sexually active then there's no helping them, no matter what I or anybody else writes on the topic.

No, this post is about this blogger.

"Abby" does seem to have a high sex drive, something I reckon she'd be the first to admit. Back in 2004 she started blogging about it, under an assumed name. Then in 2006 she got a book deal, and the book itself was recently released.

(That's happened to several bloggers, although I can't see it happening to me - which is a good thing, can you see me having the energy to write a book?)

Yesterday the bubble burst, as you'll see on her blog. A journalist has been harrassing her, stalking her if you like, and on Sunday they gleefully published her full name, details of where she works and so on in the national press. These are details which "Abby" has made an effort to conceal, not just for her own personal and professional sake but also for her family, friends and lovers.

The Press Complaints Commission's Code of Conduct states:

i) Everyone is entitled to respect for his or her private and family life, home, health and correspondence. A publication will be expected to justify intrusions into any individual's private life without consent.

As Tom Reynolds puts it "There is no 'public interest' in discovering the true identity of an anonymous blogger who happens to write about sex."

The article in question carries on to slam "Abby"'s lifestyle and lack of sexual repression to such an extent that one would think we were still in Victorian times. It must be admitted that the article does a marvellous job of proving the societal bias which "Abby" is often affected by, which is that what is normal sexual appetite and behaviour for a man, is frowned upon when demonstrated by a woman.

Personally, I applaud "Abby". In retrospect, it might have been naive to think she could get away with having a secret identity online. The internet is not a friendly place and success makes you a target. However her lifestyle, in my opinion, deserves no censure. She uses condoms and is therefore looking after herself and her partners. She doesn't bring children she cannot support into the world. She is independent. Her encounters appear to be based on a mutual understanding of what the situation is going to be each time, with a healthy amount of respect both for and from her lovers. She is able to identify what she wants and takes steps to get it. Are any of these bad things?

So, in solidarity: I enjoy sex. I enjoy it responsibly, I enjoy it openly, and I don't believe there is anything wrong with that at all.

Now, let's wait for the zoom lens to come through my window...

Helping people

In response to my last post, a commenter asked:

If I see someone going pale and looking confused, am I supposed to ask if they are OK or not? And if they say they are OK, but seem to me to be confused, do I walk away hoping they'll be OK, or do I check? I understand that folk persisting on checking might be not what you want at the time, but you have to admit, it's a bit of a tightrope for us on the "outside".

This is a good point. And, while I make every effort to be polite and profuse in my thanks to people who offer me help, "disabled" does not equate to "saint" and if someone is in a large amount of pain it's worth remembering that they're not trying to insult you personally should they come out with "F**K off and mind your own business!", they just want to be left alone with their agony and I think we've all been there.

So please, PLEASE don't be put off from offering help where you think it might be needed.

Individuals are all different, medical conditions are wide ranging, circumstances could be anything. Your assistance could just make someone more comfortable, or it could save them a trip to the hospital in an hour's time, or it could save a life. However at the very very least, if you ask someone if they need help then even if it is turned away you get to feel like you've done your good Samaritan bit for the day and can reward yourself accordingly. :)

As a rule of thumb... if you see someone who is apparently in difficulty - they've gone horribly pale all of a sudden and they've started to sway, or they've stopped in the middle of the street and they're clutching their head or their chest - then it's absolutely good and right and commendable to stop and *ask* them "are you alright? Do you need anything?" (side note: don't just grab them, they'll think they're being mugged).

If they can't answer properly, but it doesn't seem to be a 999 emergency, then things that might be helpful are:
-sitting down
-a drink of water
-discouraging people from crowding round
-finding out if there is a family member you can phone for them
-arranging a cab for them to get home safely

For help with these things, just go to the nearest shop where they *have* to have a first aider and will most likely be more than happy to help.

The trouble comes once they've said "yes, I'm fine, just a bit of a headache/cramp/whatever, it'll pass in a moment."

Are they just not wanting to make a fuss? Are they capable of making a correct judgement call? Or are they genuinely certain, with reason, that there is nothing to worry about?

Unfortunately you can't know, nor can you get a run-down of their medical history in the street (Not a word, Tom Reynolds). You don't know if you're overdoing it or underdoing it on the due care and attention front.

And this was the bone of contention in my previous post. How can I reassure my good Samaritans that everything is under control, they've done their bit and can we can carry on with our lives now?

The best way of dealing with this I ever came across was demonstrated by a security guard in Lowestoft's shopping precinct. I don't know where he picked it up but I was so impressed that once I'd got my head back together I bought a bar of chocolate for him and went looking for him just to tell him how exactly right he'd got it.

I was leaning against a wall clutching my head and he came and asked if I was okay, did I need anything. I said I was fine, it was just a bad headache and would pass in a few moments.

1) He said "You know, if there is anything you need - a quiet sit down, or to have a drink, or a taxi home - it's no trouble at all to go into one of the shops to sort that out for you." This is good because a lot of people in my state are really worried about making a fuss.

However, my headache was already easing off, so I said I wasn't going to spend much longer in town anyway.

2) He said "Okay, I don't want to hassle you, but I want to be sure you're okay, so just look me in the face and tell me whether or not you're happy for me to walk away." In other words, if I wasn't demonstrating clear signs of needing medical assistance, then he would leave the decision in my hands.

I looked straight at him, thanked him, and said that yes, I was 100% happy for him to walk away.

3) Before walking away, he reminded me "if you start to feel a bit odd again, remember all the shops have first aiders and they'll all let you have a sit-down if you ask.". Then, good as his word, he walked on.

I hope this helps.

Maybe I need business cards?

Today I managed to scare two shop assistants, one in town at Marks and Spencers and one at my local Co-Op.

By "scare" I don't mean they just asked if I was alright - I mean they were asking if I wanted to sit down or if I wanted somebody to get me a drink of water or if they could telephone someone for me. The young lady at the Co-Op even offered to walk me back to my flat to make sure I was alright.

Thing is, I wasn't feeling that awful! A bit of a headache, the usual dizziness, more muscle pain perhaps (I'm attributing that to the physical exertion of those fits, which incidentally haven't recurred since Tuesday night) but nothing incredibly spectacular. Although I must admit that my definition of "a bit" of pain is a very different thing to what it was two years ago and, I must therefore assume, quite different to the "normal" definitions.

Anyway, according to both these ladies, I seemed a bit confused and then went incredibly pale.

Now please don't get me wrong. It's good that people are concerned about each other. It's nice that they were looking out for me. I thanked both of them profusely and I hope they continue to show consideration and concern to their customers.

But I'd like some way of reassuring people when this sort of thing happens that they don't need to worry or fret or call an ambulance or make a song and dance of it. If I need to sit down, I promise to say "I'd like to sit down, please," and if I need a taxi to go home in I will say "could you call a taxi for me please?" but if I say I am okay, that means I am okay, honestly!

By the same token, however (Moon On A Stick Alert!) I don't especially want to get drawn into an in-depth discussion of my illness with every stranger who happens to see me go a bit pale. Nor do I want to be rude, though. And when I'm feeling groggy, I'm not really together enough to be properly firm and assertive or to think my way through a conversation properly.

Any ideas?

Fun with Fits

Bit of an Eek the last couple of days - I've started having rather impressive fits. Sensation-wise, it feels like cramp in my muscles which then start jerking and I can't really control it. This goes on for about three to five minutes by the clock (mum's estimate) and is then followed by little "tremors" for about half an hour afterwards.

This is not on the list of ME symptoms.

I don't actually pass out, but I don't have much idea what is going on, and afterwards I'm groggy as hell for ages, not to mention sore and exhausted.

Of course on the plus side, I haven't injured myself, as it's pretty difficult to injure yourself while you're in a bed...

Yesterday evening I was on the phone to Steve and started having one, so he called my parents and asked them to go to my flat and check on me. Mum got here and I was still twitching, and given she'd seen me have one at her house not six hours earlier, she decided to call the doctor. We ended up going to the local hospital/health centre which doesn't have an A&E but is a sort of "base" for the out-of-hours doctors for the area - and then they tell you if you need to go to the Big Hospital Proper (which to be honest, the state it's in, is to be avoided at all costs).

Out of hours doctor told me to make an emergency appointment at my regular surgery for today, where someone with access to my medical records could check me over, and to stay with my parents that night. No Big Hospital, phew! Mum popped back to my flat to get me some overnight stuff, which bless her included a cuddly toy Steve got me. :)

The emergency GP at my regular surgery looked over my notes, checked me over, and seemed rather focused on one particular thing in the notes. When I got ill and was being given all sorts of tests to try and determine what was wrong with me, there was "an anomalous result" on my EEG (a type of brain scan). The neurologist decided to see how it compared to the other scan, the MRI, and decided on the whole there wasn't anything there to worry about.

The GP I saw today felt that there was a possibility that this "anomaly" from the tests last year could have developed, or been aggravated by stress/the heat/nothing/anything/everything, so she wants to refer me BACK to the neurology department to be checked out AGAIN.

In the meantime, another possibility is that my system has had enough of one of the medications I'm on - unlikely but you never know, and I'm only on a half-dose anyway so I should get away with cutting it out. See how that goes.

Why can't I just have something nice and simple? Go to the doctor, they take my blood pressure and look in my eyes and ears and throat and hit me with the little hammer and say "okay Mary, the problem is This! You'll have to rest up for a couple of weeks and take these tablets, but then you should be fighting fit and back at work again, any problems come and see me, if not we'll just have a follow-up appointment in, shall we say a month?" If this happens to you, appreciate how lucky you are!